Prior Recipients
This page contains stories of recipients who have received KARE Funds since the Foundation launched in November, 2021. Please review the stories to understand the positive impact donor funds are having on so many families meeting the mission of the Foundation.
Meet Chuck Beckman and Sharon Zaubi
How the KARE Foundation’s paths crossed with Chuck came through an uncanny, but extremely fortunate, route….
When soliciting bands to play at the 2nd annual KARE FEST, an incredible band, Heavy Hitters, signed up to donate their time to play at the FEST. It turns out, their guitar player Chuck Beckman, recently lost his partner and soulmate Sharon Zaubi to Glioblastoma on April 22nd, 2019.
To backtrack with the story of Chuck and Sharon, in 2011, Chuck was playing guitar in a different band when he met Sharon. Sharon was an incredibly talented singer and bass player. There was a great chemistry between them, and they decided to try writing songs together. From that collaboration, their relationship grew and Sharon became Chuck’s life partner, as well as my work partner in 2012. They started playing together as a duo, and in several bands including the Heavy Hitters.
In 2014, Sharon suddenly had a seizure and was rushed to the hospital. Scans revealed she had a brain tumor the size of an orange in her right frontal lobe. At that time, the diagnosis was an Astrocytoma Grade 3. Unfortunately, Astrocytoma’s are the precursor to Glioblastoma. Sharon was scheduled for surgery, and they were able to remove 95% of the tumor. As standard treatment for both Astrocytoma and Glioblastoma, Sharon started radiation and chemotherapy.
A second surgery became necessary 5 months later, and two more surgeries over the next several years. Unfortunately, the tumor turned into a Grade 4 Glioblastoma. In 2019, a scan revealed the tumor had progressed to the point where she had only weeks to live. Chuck took her home to care for her until her passing on April 22nd, 2019. As you can imagine, the KARE mission was very near and dear to Chuck’s heart and that is why the Heavy Hitters, in honor of Sharon, elected to donate their time to play for the KARE FEST.
Fast forward to 2024, the KARE Foundation contacted Chuck with the Heavy Hitters to see if they were able to play again this year. This is when Chuck mentioned he had been diagnosed with colon cancer and was not able to play with the band and was not involved in scheduling while on medical leave. When asked how he was doing, Chuck said they found the tumor soon after the FEST in 2023. Other scans revealed 2 lymph nodes were affected. Chuck had surgery on December 13th, 2023. They removed 14 inches of colon and 25 lymph nodes to be on the safe side. The surgery was successful, but he had to have an ileostomy bag while he healed and then a 2nd surgery on February 5th to reverse the ileostomy. He is now recovering from the 2nd surgery and will not be cleared to work again with the band until the April timeframe. As a self-employed musician, the financial stress with no income for nearly 4 months has been extremely stressful and filled with anxiety!
This is when the board convened and decided we needed to support Chuck… who through his selfless heart, supported the KARE Foundation mission for the KARE FEST is 2023 in honor of Sharon Zaubi! Chuck did not have words for how thankful he was to the KARE Foundation for the financial assistance at a time when he needed it most!
We will continue to stay in contact with Chuck to monitor his progress! Please keep him in your thoughts and prayers as he heals, continues treatments to beat the cancer, and returns to playing music again with his incredible band! We know Paul would be giving us high-fives for our decision to support Chuck! Unfortunately, the Heavy Hitter band was booked for the day of the FEST in 2024, but we are hopeful they will be back on the roster for 2025 with Chuck at the helm playing his guitar! 😊
THANK YOU again donors! You make this all possible.
Blessings all!
Meet the Mazzocchetti Family
On a snowy Saturday morning, drinking coffee and watching the NBC news channel out of Pittsburgh, (the station I receive living in Western MD), a story came on NBC about a Pittsburgh foundation called Jamie’s Dream Team raising funds for a young mom (Savannah, 23) who was just diagnosed with Glioblastoma. The foundation wanted to provide her, her son (Konnifer, 4) and her parents a dream vacation to Disney before she had to start chemo and radiation treatments. The segment was aired on NBC to spread the word to help Jamie raise funds to make this happen for the family. It gave me goosebumps!!! I shared the story with the KARE board and they all approved Savannah to be our March recipient!
After getting approval from the board, I connected with Jamie from the foundation, and we discussed how we could collaborate our financial support to the family. KARE gave a portion of funds to the trip and the rest to the family. Once again, this connection is heaven sent… what are the odds I was watching TV at the exact time the story aired!! We both know it was meant to be.
The short timeline to get arrangements made for the trip as Savannah was recovering from her surgery, was nothing short of a herculean task. Jamie pulled it off!!! This was the 1st time the family had ever been on a plane, and they did not even own luggage! Jamie got them everything they needed to have a “making memories” trip eliminating any worries. The Mazzocchetti family cannot thank the Jamie’s Dream Team foundation enough! They had the most amazing vacation they will never forget. 😊
They are also VERY grateful for the financial support provided by the KARE Foundation. They know this journey is not going to be easy and will be expensive! I have also connected with the father (Joe) to discuss what they should expect as things progress and provide information for them to review to learn about the cancer, sites to go for medical reviews and recommendations for trials, etc. Also, the KARE foundation is there for them as they work their way through this life-changing diagnosis. Savannah and Konnifer live with her parents outside of Pittsburgh, PA.
Savannah’s surgery was a success! The neurosurgeon successfully removed the tumor. As she healed, the symptoms brought on by the tumor improved significantly. By the time they were at Disney, Savannah was able to finally walk on her own again and regain most of her speech.
Right before Savannah’s diagnosis, she started a new job. She was fearful she would lose her position, but the company has been so supportive and is saving the position for her when she is able to return. Savannah is hoping she can return soon. She wants to get back to as normal a life as possible! Especially being a mom to her beloved Konnifer!!!
I would say Savannah has a guardian angel on her side… as bad as the diagnosis is… it is uncanny how these wonderful connections have been made. We are hopeful Savannah will be able to beat this beast called Glioblastoma. She is young and ready to fight!!!
Thank you, donors. We can share these beautiful stories because of your generosity. I also want to thank Jamie for her collaboration with KARE!!! This will not be the last time we connect our worlds helping those with terminal/life-threatening illnesses in need.
Please keep Savannah and her family in your thoughts and prayers as she undertakes this battle against Glioblastoma.
Blessings all!
Meet the Lipschutz Family
Once again, the KARE Foundation connection to our recipient has been heaven sent! An email was received in the general KARE contact mailbox from a fellow Guilford resident, Laurie, whose friend in Madison CT was recently diagnosed with Glioblastoma (GBM). Hearing his diagnosis, Laurie knew about the KARE Foundation and understood part of the mission of the foundation was to help provide financial assistance to families fighting this terrible brain cancer.
After reading the email, we contacted Laurie to hear about the family. Josh Lipschutz (53) was diagnosed with a recurrence of an Astrocytoma brain tumor in 2020. While Astrocytoma is a less aggressive form of brain cancer, it can become more aggressive over time. Despite three brain surgeries between December 2020 and January 2023 and both conventional and experimental treatments, Josh and his wife Abby received the terrible news that the cancer was progressing.
This reality rocked their world. Josh and Abby have 2 young children now 12 1/2 and 11. After finding out about this progression, they knew he would be in the fight for his life. Josh has been unable to work for two years, and Abby has had to significantly cut back her work hours to manage Josh’s medical needs, often necessitating travel to and from Boston for his appointments with his medical team, as well as care for their family. Given that Abby owns her own business, as a practicing therapist, you can imagine, this is causing a significant financial hardship for the family.
It is very sad that another CT shoreline famil is fighting this horrible cancer, and their lives are being challenged with this reality. Community generated donations helped the family take an amazing sailing trip last Spring, before Josh became unable to travel. Josh, an avid sailor, felt the urgency to make memories with their children.
When discussing the situation with the board, we all agreed the Lipschutz family would be our next KARE recipient! How blessed is the Paul Dostie KARE Foundation to be able to help families like the Lipschutz’s!! This can only happen because of our generous donors!!! Please keep this family in your thoughts and prayers!!
Blessings to all!!!
Meet Angela White-Davis
The KARE Foundation is honored to announce our January Hypertrophic Cardiomyopathy (HCM) recipient, Angela White-Davis. When we contacted Angela, the history of how HCM impacted generations of her family was unbelievably heartbreaking. The board wholeheartedly agreed she would be our January recipient.
Severe HCM can significantly impact a person’s lifestyle since the symptoms include pain, shortness of breath, arrythmias, fatigue, etc. The heart is enlarged, so blood flow is restricted and impacts a person’s ability to live a normal life. Angela was diagnosed in her 30’s and received an Implantable Cardio Defibrillator (ICD)/pacemaker which is common in patients with HCM. This ICD/pacemaker is a lifesaving device that will “zap” the heart back into action in the event of a potentially catastrophic episode.
As the disease progressed with Angela, her symptoms were severe enough she needed to go on disability since she was no longer able to work at her job in healthcare, a job she loved. This is where our story begins with Angela since the KARE Foundation approved to provide financial assistance to fill the gap as she waits for her SSDI to begin in 2024.
HCM is a genetic disease that can be passed from generation to generation. The bullets below highlight how HCM has affected her family… then, now and into the future.
Her father Bernard passed at the age of 59.
Her brother Brian passed at the age of 23 as he was just at the beginning of his career after graduating from school.
Her other brother Jason was diagnosed with HCM and had an ICD/pacemaker implanted at the age of 38.
Angela had a full-term stillborn baby who died of an enlarged heart. They tried to do fetal surgery to save the baby before birth but it was too late.
Angela’s youngest son Dandre was diagnosed at age 15 and received his ICD/pacemaker which actually saved his life a couple months after he had the device implanted. He “flatlined” due to his HCM but is alive today because of the ICD!
Her grandbaby has a heart murmur but he is being closely monitored since HCM can present later in life.
As the next generation arrives, the fact this disease may be passed along in Angela’s family is a reality.
In recent years, the medical field has identified the gene for HCM, as well as visually with echo cardiograms, so they can effectively diagnose the disease. There are also more medical treatments available to proactively manage the disease. However, there is no cure. HCM is life-threatening.
After sending Angela the picture collage, (shown above), for approval, the note received back to the KARE Foundation was extremely emotional for all of us. Below is her response which we felt was important to share.
“Beautiful Linda! I broke down and cried! That’s a lifetime of love and legacy along with hurt and pain all on one page. The struggle is real! I have had to endure to survive while living with hypertrophic cardiomyopathy and watching my family struggle as well. The overwhelming emotions that poured out of me to see that my life struggles have finally been recognized and me knowing GOD has got me thru it all and continues to bless me and my family! You and the KARE Foundation are true blessings!”
All we can say Angela is for you and your family to “Keep up the FIGHT!!! We are blessed to have crossed paths with you and your beautiful family and humbled to be able to provide support in some small way!!!!
Thank you KARE donors for letting the KARE Foundation be able to help families like Angela’s!!
Blessings all!
Meet the Warne Family
Imagine being a young couple who had their 1st child, a perfect baby boy in every way when he was born, only to start seeing symptoms that concerned them and WHAM, they find out their sweet baby at the age of 3 months, is in the fight for his life against an extremely rare and deadly brain cancer!!! This is the story of baby Mathias, mom Shiloh and dad, Keith.
This family was introduced to the KARE Foundation through a family member related to Linda Dostie Kelly. Mathias is the grandson of Linda’s sister-in-law’s Kym Kelly’s cousin. When Kym heard the awful news about her cousin Beth’s grandson, Kym was familiar with the foundation and reached out to see if this sweet family met the mission of the foundation. The board reviewed the story and wholeheartedly agreed, the Warne family would be our December recipient. Once again, this is a connection heaven sent!!
Normally, the KARE foundation writes the recipient stories for families to review and approve prior to posting. In this circumstance, Shiloh wrote a story for us to review and her write-up, in her own words, was too compelling not to include. Our hearts break for this young family whose lives have been turned upside down. Shiloh’s story is below.
“Mathias Warne, born in July of 2023, is a 4-month-old boy who came into this world so perfectly. His favorite people are Mom and Dad. His favorite things are cuddles with mommy and daddy, crinkle toys, books, soft toys and contrasting colored toys. He lives on an acreage near Colton, SD with his mommy, daddy, doggo Lilac and cat Mike. Mathias was living his best life in rural South Dakota and putting smiles on everyone’s faces including his loving parents, grandparents, great-grandparents, aunts, uncles, cousins, and many friends.
In Oct of 2023, all of that changed when he became more and more fussy with frequent vomiting. His mother knew something was wrong and kept fighting for him by taking him to the doctor over a two-week period until they finally saw that his head was perhaps larger than it should have been. An ultrasound was ordered, and they found he had hydrocephalus. An external ventricular drain was placed as tests were ordered to find out the reason for the fluid. A large mass was found where his cerebellum should be and was blocking the flow of cerebrospinal fluid which led to the hydrocephalus. Surgery was scheduled for the next day to remove the mass and get it submitted for testing. Dr. Vuong, an incredible neurosurgeon with Sanford Children’s Hospital in Sioux Falls, SD, and warrior for Mathias, was unable to remove the mass in its entirety. Two weeks later, on Oct 27, the tests revealed the mass was a type of tumor called Atypical Teratoid/Rhabdoid Brain Tumor, or AT/RT for short. This is a rare central nervous system cancer that is very aggressive and hard to treat, especially at his very young age. Radiation is a large part of the treatment protocol for this type of tumor and an infant cannot undergo radiation.
Mathias was admitted to the oncology department at Children’s Hospital Colorado in Denver on Nov 3, 2023, to undergo treatments where they specialize in this type of cancer. His treatment protocol consists of chemotherapy and stem cell collection in the short term with radiation being administered when he is old enough.
Mathias’ mother, Shiloh Warne, who was within a few weeks of graduation from Mitchell Technical Institute, is now living in Denver 10 hours from their home in southeastern South Dakota. His father Keith, a semi-truck driver, has joined his son and wife in Denver.
Mathias is a fighter with his red hair attitude. He and his parents have the blessing of the biggest support team including his great-grandparents, grandparents, aunts, uncles, cousins, and an entire community of extended family, friends, and neighbors. The KARE foundation is now considered family for their amazing support and gift that will help Mathias get the best medical care he can get to have the best chance of growing up. Thank you, KARE foundation, for your support.”
Yes Shiloh, we are now family! The KARE Foundation will pray for sweet Mathias to beat the odds!! We are honored to provide financial support to alleviate some of the stress your family is facing so you can focus on fighting for your beautiful son!
Once again, thank you donors for helping us be part of the Warne story. Please know, you are all members of the KARE family too!
Blessings all and please keep Mathias, Shiloh and Keith in your thoughts and prayers!!!
Meet the Laveck Family
For November, our recipient is a bit off our mission, but the KARE Foundation knows Paul would have approved since their story is so painful…
This family came to the KARE Foundation via our connection at Dana Farber in Boston, MA. After we supported the Malave family, they contacted us to see if we knew of any other foundations that may be able to help a family in desperate need of financial assistance since their medical challenges, as a single mother of 3 young daughters, has been beyond comprehension and poses so many challenges into the future.
I have included the email we received about the plight of this family from the Dr. since it speaks volumes as to why we veered off our mission to help them. If any of you knew Paul, you would KNOW he would not hesitate to help this family.
“I have a family of two girls who have a rare malignant genetic blood disease who I transplanted and a third child who has intractable seizures. The oldest daughter died of complications of bone marrow transplant (horrible gvhd with TA-TMA and infections). They are in a dire situation bordering on homelessness and the mother was just diagnosed with metastatic ovarian cancer. It’s a nightmare. I have leveraged everything I can from Dana- Farber and have sent them food money myself. I would love to know if there are others in your community who might be able to help this family.”
Laura Laveck (42) is the mother of 3 daughters, Ashilee Rose “Shy”, Evera “Evie” and Jonilaya “Jojo”. As mentioned in the email, Shy, the oldest of the 3, passed on 1/2/21 at the age of 7. Her sister Evie, now 8, received a bone marrow transplant as well and is stable at this time. However, this extremely rare genetic blood cancer “lurks” in the body and can attack again at any time. (similar to Glioblastoma). The youngest, Jojo now 7, has a neurologic disorder that causes seizures that medicine has not been able to fully control.
As Laura is fighting for her girls to stay alive, Laura was diagnosed with metastatic ovarian cancer and had to have a complete hysterectomy. Unfortunately, she recently found lumps in her breasts and is scheduled for a mammogram next week to learn the results. We pray the lumps are benign and has NOT metastasized from her ovarian cancer.
To lose one child and know there is constant threat looming she may lose another… as well as having her own health challenges…the stress on Laura both mentally, physically, and financially is completely overwhelming.
How could the KARE Foundation not step in to help?! The board agreed we needed to help this family and the Dana Farber team was so appreciative of our support to Laura and the girls. Laura was very emotional and blessed when we notified her that the KARE Foundation approved her family to be our November recipient since the money came at a critical time. It humbles the KARE foundation to know the financial assistance we provide is a blessing for so many recipients.
As a mother who needs to be home to care for her children, (and herself), and is required to travel for medical treatments on an ongoing basis, the financial struggle is a constant pressure for her family. Thankfully the KARE Foundation was able to help in some small way. Please keep Laura and the girls in your thoughts and prayers as they continue to fight their medical challenges and hopefully get back to a place of stability in their lives.
We cannot continue to help these beautiful families without your generous donations!! Blessings all.
Meet Audrey Lloyd
As Paul’s wife Jeanne was reviewing one of the Hypertrophic Cardiomyopathy (HCM) Facebook group sites, she ran across a post from a 25-year-old woman, Audrey Lloyd, who was diagnosed with HCM at 14 and was just put on the transplant list for a new heart. She worked at a daycare and was attending graduate school and her failing health was seriously impacting her ability to do both since she was extremely fatigued and had a very hard time breathing. All of this was so overwhelming to the always positive Audrey… what future was ahead of her?? Would she get a heart?? How was she going to pay her bills? ETC… It is hard to understand the impact these life-threatening diseases have on people, especially in the prime of their lives!!
This is when Jeanne decided to do research into Audrey and discovered she lived in the Boston area. As part of the KARE mission, we help patients with HCM, a heart disease that has been a struggle in Paul and Jeanne’s daughters’ life all her 25 years!! After Allie’s 3rd open heart surgery in 2021 to extend her current heart, Allie has been well enough to start a job in the Boston area. These similarities between Audrey and Allie touched Jeanne and she brought Audrey’s story to the board. We all agreed Audrey would be our October recipient!!!
In the meantime, Audrey received the call they had a donor heart for her!! When you get the call, you are required to drop everything! I have included Audrey’s own words she posted to Facebook after receiving the heart transplant so you can understand the positive and grateful woman she is!
“Hello Everyone,
I want to personally thank each and every person that prayed for me, sent me cards, gifts, thought of me or supported me or my loved ones in any way. The love that this experience has shown me has been both surprising and wonderful. Strangers, loved ones, friends and family have all been there to support me. You don't realize how good this world is until you're going through something hard and suddenly everybody is there for you.
Today I can say I am 1 month post HEART TRANSPLANT. As a 14-year-old I was diagnosed with HCM (Hypertrophic cardiomyopathy). This diagnosis states that the heart muscle is thickened and may have trouble pumping blood throughout the body. At 18 years old I had an ICD implanted. An ICD sends weak and strong volts of electricity through the heart when it is not beating properly. When I was 23 years old, I was told my HCM was getting worse and that it was caused by a genetic mutation called Danon's disease. At 24 years old my ICD shocked me strongly (similarly to an AED) and on August 15th, 2023, I got a gift from my wonderful donor. This organ donor not only saved me that night but many others as well.
I currently have a weak body but a strong heart. Each day I feel as if I am getting stronger, instead of weaker. I am more motivated than ever to continue school, stay healthy and more than anything, help others. I am beyond lucky to have such a wonderful support system around me.
If you take anything from this post, please remember to take care of your mind and body. Without having these things taken from us we can’t truly understand what it would feel like if we lost it. Be thankful for every day, person, and experience that you have in your life. We all have a purpose, even if you haven’t found it yet. Stay strong, Be positive and Live Life to the Fullest.
Full of Love,
Audrey”
The Paul Dostie KARE Foundation is honored to help this young woman in some small way!!!
Audrey credits her amazing family for helping her through this difficult time, her mom Jen, dad Jeff, brother Quinn, boyfriend Jake and her mini golden doodle Lava. We are excited to see what the future brings to Audrey as she heals from the surgery and continues with her studies to become a school psychologist!!! Audrey and Allie have connected since they are kindred spirits in their HCM journeys, both living in the Boston area, and being the same age.
Audrey’s motto is “Just Smile”. We will Audrey 😊 And Paul is smiling down on us as his legacy continues to help others like you and to see you thrive into the future!
Our support is the result of generous donors who understand our mission! We cannot do any of this without you.
Blessings ALL!
Meet The Malave Family
The connection to our September recipient came by way of Steve Terreri’s, (KARE Board VP), connection with the Dana Farber medical team as part of his “real” job in the pharmaceutical industry. During a conversation with a Dr. at Dana Farber, the topic of the Paul Dostie KARE Foundation came up and the Dr. said she would pass the Foundation’s information along to their Patient Resource Team in the event any patients meeting the mission of the foundation needed assistance.
Lo and behold… soon after, Steve was contacted by the Director of the Pediatric Resource Program of Cancer and Blood Disorders at Dana Farber about a very desperate situation regarding an 11-year-old girl diagnosed in Florida with Glioblastoma. Due to the severity of her disease, this young girl was referred to Dana Farber and Boston Children’s Hospital for further medical diagnosis and treatments. This is the start of the stressful, frightening and financially challenging journey for sweet Victoria “Tori” Malave and her family; father Eliu, mother Valinda, and older sister Mariah.
To fight for their precious daughter’s life, the family was required to drop everything and move to Boston for an indefinite period as Tori received additional tests to determine the extent of her cancer and the path forward for treatments. After being initially diagnosed with Glioblastoma, the tests revealed Tori has a rare cancer that spread throughout other organs in her body. This grave news was devastating to the family, but they held onto their faith, strength, and trust in Dana Farber to do everything possible to fight for their little girl.
However, the financial toll on the family to travel to Boston, find temporary housing, pay medical bills, as well as the expenses for day to day living without income coming in, added to their already incredibly stressful situation. After the KARE board heard the family’s story, we agreed they would be our September recipient for KARE funds. With assistance from the assigned Resource Specialist for Tori, the KARE Foundation was able to make the connection with this amazing family.
The treatments Tori has been receiving with Dana Farber and Boston Children’s Hospital have been showing significant improvements in her PET scans. She has also received a specific targeted therapy for her brain tumor. When Tori received the initial craniotomy in Florida, they were not able to extract the entire tumor. This targeted therapy is to stabilize and shrink the tumor enough so she can have a 2nd craniotomy to hopefully remove the remaining tumor. The therapy was successful, and Tori’s health was stable enough to allow the family to return home to Florida for 10 days before her 2nd craniotomy scheduled on August 31st back in Boston. Thankfully the surgery was successful and she is on the road to recovery and onto her next phase of treatments!!
Tori is an active young girl who is fighting to return to the life she loves in Florida with her family, friends, and soccer team. Thankfully, her family, friends and teammates have been so supportive of Tori . Her soccer team cannot wait for her to beat this cancer and get back on the soccer field once again! That is the KARE Foundation’s hope for her as well!!!
The definition of “Victory” (or conqueror) is derived from the Latin word “Victoria”. We believe with the medical treatments Tori is receiving from the teams at Dana Farber and Boston Children’s Hospital, as well as the positive and faith driven attitude of the family, Victoria will be “Victorious” in this FIGHT against her cancer!!!
Thank you donors for making this all possible! We cannot help any of these beautiful families without your support. Please keep Tori and her family in your thoughts and prayers as she recovers from her surgery and receives her next round of treatments!!! As Paul would say… “YOU GOT THIS TORI!”
Blessings to all.
Meet Jessica Leichtweisz
For August, we were introduced to our recipient by a family friend whose cousin Jessica, just received the devastating diagnosis she has Glioblastoma.(GBM) located in her brain stem. We contacted Jessica’s brother Ryan and after hearing her story, the board knew she had to be our August recipient. Once again… the connection has been heaven sent!
Jessica is 37 years old from New Jersey but is now living in Arizona. She has always been a vibrant, compassionate, and strong-willed individual who has devoted her adulthood towards teaching children with autism and helping those in need. However, GBM unexpectedly barged into her life in May, challenging her dreams of a long and happy future. The news has left her family and friends devastated, but they refuse to lose hope.
Jessica is a fighter, and when the odds are stacked against her, that makes her even more determined to prove them wrong. That’s the strong-minded spirit she has and needs now, and her family and friends are determined to fight alongside her to give her the best chance for a positive outcome. She has good and bad days and the effect of the tumor on her brain stem has impacted her ability to move, eat and speak. Thankfully Jessica’s parents have been able to travel to Arizona from New Jersey to care for their precious daughter. As a parent… I cannot imagine the stress, anxiety, anger and fear that comes with your child being diagnosed with GBM. ☹
Unfortunately, despite having insurance which will cover the expenses for radiation therapy and chemotherapy, these more traditional treatment approaches have a lower success rate for GBM located in the brain stem. Jessica’s care team at MD Anderson Tumor Center in AZ recommended a series of treatments not covered by insurance so the medical bills, and mounting costs associated with battling this disease, are taking a toll on Jessica and the family. This is why the KARE Foundation exists! Our mission is to provide financial support to people like Jessica and her family to hopefully alleviate some of their financial stress. Right now, Jessica and the family need to focus on helping her fight this disease!!
During her journey with GBM, Jessica has shown immense strength and resilience. She has endured countless medical appointments, tests, and the start of treatments, (some who have given her adverse reactions), all while facing the emotional challenges that come with battling cancer. Her courage and determination are an inspiration! Jessica has a strong spiritual base and that will be her rock as she moves forward with her treatments. We will continue to keep her in our thoughts and prayers as she keeps FIGHTING!!!! We will also be there for the family and Jessica if they need any emotional support or advice during her fight.
This “rare” cancer seems to have morphed into something not so rare and takes its victims at any age, any time!!! We are sure Paul is up there rooting for Jessica to beat this beast!! Thank you donors for making it possible for the KARE foundation to help this beautiful young woman in the fight for her life.
Blessings to all.
Meet the Tasto Family
As local automotive business owners in Guilford, CT, as well as friends from their days in school, the Dostie family boys were friends with the Tasto’s. In the last couple years, Lane Tasto and his family have experienced challenges many of us cannot comprehend!!!!
In 2019, Lane suffered a stroke while working at his Auto Body Shop and because of the fall, suffered a traumatic brain injury. As terrible as the fall was to Lane and the family, it turned out to be a blessing in disguise. While he was in the hospital, the medical team did extensive testing and discovered he had lung cancer & needed emergency surgery on his intestines. Lane was in the hospital for three months, but during that time recovering, he was determined to get back to work.
Unfortunately, due to the brain injury, Lane is no longer able to work and forced into early retirement and on disability. Not being able to work hasn’t been easy for Lane. Like Paul, Lane loved working and running his own business. He loved his customers and always went above and beyond for them. Even if all he could do was lend an ear on a bad day, he always did what he could to make their day just a little bit better.
Due to his injuries he had to close the business. Over the past year the family has tried to sell the property, but time and time again the deals have fallen through. During the latest deal a problem was discovered & unfortunately the cost of resolving the issue is way beyond their means. With Lane being out of work for several years and still having mounting medical bills, they are struggling just to keep afloat.
Lane has shown kindness to his community his entire life. He was born and raised in Guilford and had always been an upstanding and giving person to the community, especially when someone was in need. The KARE Foundation providing support is somewhat off our mission but is 100% what Paul would have wanted us to do!! Community and friendships were everything to Paul and knowing our support may help Lane and his beautiful family in some way, he would be giving us 2 thumbs up and his giant bear hugs! We are hoping and praying obstacles will move out of the way for the Tasto family into the future!!
Meet Abdel Sendi - Trade Scholarship
As part of the KARE mission, the board works with schools in the area to identify young adults graduating from high school who are looking to enter a career in the trades. The KARE Foundation interviews students and receives recommendations from faculty to award a financial scholarship and/or apprenticeship to the selected student. This year we were pleased and honored to be able to give the award to Adbel Sendi, an incredibly hardworking and highly recommended student from the Middletown, CT school system, and whose dream it is to become a mechanic!
Abdel had so many challenges other students do not have. He moved to America less than 5 years ago from Morocco hardly knowing any English and not knowing what he and his family were going to face when coming to a new country. During his senior year, Abdel was asked to write a short essay to describe himself. After reading the essay, the board felt it was so revealing about his character and how Abdel took these challenges and made them opportunities! The following is the essay written by Abdel.
“Moving to America was the biggest turning point in my lifetime. Everything was new and I had to adjust through it. There was a change in the educational system, language, friends, culture and environment. Basically America was a whole new world for me. I was thirteen when I got to know that my parents had applied for US immigration and within a time span of one year we had to move to America. Moving here was a big achievement for me as a student. I was able to see a bright future ahead of myself, but also knowing that I had to struggle a little in the beginning years.
At that time I was really worried about the change. I have heard of America as the land of opportunity, but things could be different for me. Being in America has given me so many new opportunities, which includes my current dream of becoming a car mechanic. I have always had an interest in repairing machines and cars.
Looking at my life now, the fact that I am able to go to college, drive a car, and be independent is a blessing. Many people that are my age don’t get those opportunities. Through the process, I learned not to be afraid of new beginnings. New beginnings bring with them new opportunities, friendships, experiences.”
YES!! Abdel is reaching that dream and the Paul Dostie KARE Foundation is beyond thrilled to be able to provide some financial support to help him start his journey to study auto mechanics at the local community college. We are so excited to see Abdel get the training he needs to live his American dream! Paul would be delighted to know in his honor, we are helping Abdel take that next step in life.
Meet the Mundorf Family
During the hustle and bustle of preparing for the KARE FEST in June, I received an email to the KARE general mailbox from Lorie Mundorf, whose husband Keith has been battling Glioblastoma (GBM) for 3 ½ years! In her anguish about their mounting medical bills to keep him alive and seeing my post on a Glioblastoma site, Lorie decided to contact the KARE Foundation to see if their family could be a candidate for funds. After having a conversation with Lorie and hearing about their situation, my subsequent conversation with the KARE board agreed the Mundorf’s to be our July GBM recipient!
Keith and Lorie live in Indiana and have 5 children, 3 foster children and 8 grandchildren!! Obviously, these are giving people and family is everything. Keith was diagnosed in October 2019… right around when Paul was diagnosed. He was sent to the Mayo Clinic in Minnesota for his tumor resection, (99% removed from the left temporal lobe), and after the surgery, they were required to travel to Mayo every 2-3 months for his MRIs and other treatments. Thankfully, one of the Mayo trained Doctors specializing in GBM recently moved to a hospital nearer to their home in Indiana so they do not have to travel to Minnesota every couple of months. That is saving Lorie and Keith so much time and money for food/lodging, etc. and more importantly, for rest!
The fact Keith has survived this beast of cancer for over 3 years is amazing!! As mentioned before, the extended length of time he has beaten the beast…the result has been mounting medical bills to keep him fighting. Keith initially did standard chemo and radiation and is now being treated with the Optune™ cap, a device several other recipients have used as treatments. Using the cap is an incredible commitment that requires shaving his head every other day and dealing with the side effects of electrodes attached to your scalp over 18 hours a day. However, the commitment is worth it if it is working. The fact Keith is still here is a testament his treatment plan has been successful for him!!!
This family is all about making memories together. The hardships they have faced have only been hurdles in their path to keep moving forward. In addition to the medical treatments, Keith’s positive attitude and the amazing support of his family are critical to his ability to keep beating this cancer. We will keep Keith and his family in our thoughts and prayers as they continue their journey fighting GBM!
Thank you, donors, for your generosity!!! Your donations continue to enable us to help families like the Mundorf’s!!
As Paul would say… “YOU GOT THIS KEITH!!”
Meet the Frazenbaker Family
How can I begin with this story… there are so many connections that just cannot be explained except to be heaven sent. This is the story of how the KARE Foundation connected with Fletcher Layne Fazenbaker!!
For those who know me, I live in Western MD in a small town. Recently I stumbled upon a story of an infant who was born on July 24th, 2022, with a life-threatening brain tumor. Like my hometown of Guilford, CT., this small town is the most supportive and amazing community when it comes to helping others. We are blessed to live in this wonderful village.
As usual, I started to do investigative work to find out the type of brain tumor this sweet baby was born with and if the family met the mission of the foundation. And low and behold… they did. Fletcher Layne was born with a high-grade infantile glioma…a rare and cancerous glioma tumor with very little chance for survival. ☹
Several highly esteemed medical facilities told the Fazenbaker family there was nothing that could be done, and they should take Fletcher home and keep her comfortable until she passes. Well… this prognosis was not acceptable to Fletcher’s parents, Billy and Stevee!!!! With the support of their wonderful family and friends, they were determined to do everything possible to fight for Fletcher’s life!!
Stevee and Billy decided to contact St. Jude’s Research Hospital in Memphis, TN. St. Jude’s requested they send her medical records and after their review, asked them to bring Fletcher, (now about 3 months old), to TN. There were no guarantees, but St. Jude’s decided to take on the challenge to help baby Fletcher. Stevee and Billy left for TN and ended up staying there for several months as the Drs researched options to determine if and how they could treat and remove Fletcher’s tumor. Like Stevee, Billy, family, and the community, St. Jude’s did not give up on this precious baby!!
On March 24th 2023, after many other procedures and treatments at St. Jude’s, the medical team was able to remove the deadly brain tumor in Fletcher! Her progress since the surgery has been nothing short of a miracle and Fletcher and her family finally returned home in May of 2023!! Another miracle is after the glioma tumor was removed; the tumor was contained in a sac which brain cancer specialists have never seen before. This is important to note since the sac may have kept the glioma from spreading to the rest of the brain! (PRAYERS PLEASE!!!)
As Fletcher’s grandmother Traci mentioned in post in May, “She is halfway through her targeted treatment at St. Jude Children's Research Hospital to ensure that her high-grade infantile glioma never returns. She smiles through the treatment, takes her medicine like a champ, tolerates dressing changes …with the best attitude a baby could have. I believe she’s the strongest little soul in the world!”
I was fortunate to meet this miracle baby when participating in a walk for the Cindy’s Fund Foundation Fundraiser in Oakland, MD on May 23rd, Cindy’s Fund also helps families financially in the community fighting many types of cancers and has done so much for the community. The walk was the day before Fletcher’s 10-month birthday. It gives me chills when I think about how this family and St. Jude’s did not give up! Fletcher continues to progress, defy the odds, and is giving so many people great JOY!! This family of great faith knows there is a long journey ahead, but they also know this sweet baby is in God’s hands!
Another quote from Fletcher’s grandmother Traci really spoke to me and I hope to you as well.
“We have grown as a family, more aware of the gift of this life… everything looks different, and we are better because of it. Fletcher has a mighty purpose as we pray for a miracle and know that God is in control…”
We agree Traci…. we agree!!!! Fletcher is at St. Jude’s this week for a follow-up visit so please keep that baby girl and her family in your thoughts and prayers. I am so grateful and humbled the KARE Foundation has been able to help this beautiful family in my new hometown 😊
Meet the Johnson Family
Once again… how our connection was made with the May Glioblastoma (GBM) recipient is without a doubt, unbelievable and once again, heaven sent!
A couple weeks ago I received a group text from my niece’s mother-in-law and her friend Missy about a friend of Missy’s, (Wendy), who just found out her husband was diagnosed with GBM. The crazy thing is Missy and her friend Wendy are both Middlesex Emergency Department staff members. These angels were the reason our immediate family was able to get in to see Paul before he was being transported to Yale for what we thought then was surgery to put a shunt in his brain. Little did we know he was going to pass the next day.
Paul declined so quickly… and that night when they got us in to see him, he was not able to communicate but he was able to squeeze our hands to let us know he knew we were there. This was before COVID protocols were lifted so the fact these incredible ER staff members were able to get us into that room was nothing short of a miracle! That is a moment in my life I will never forget and takes my breath away every time I think about it… What are the odds that one of these angels would find out HER husband was diagnosed with GBM!!!!
To add to the uncanny connections of this story, Wendy’s husband works for the Town of Clinton, CT and worked with James Forchielli, a GBM KARE recipient back in December of 2021. James unfortunately passed soon after in January 2022 from this horrible cancer. ☹
And now… this is where the KARE Foundation’s story begins to help support Dave and Wendy Johnson in Dave’s fight against this beast called Glioblastoma!
Dave had surgery to remove the tumor at Yale in late April and will be starting chemo and radiation on May 15th. Thankfully the surgeon, (same surgeon as Paul’s), was able to remove all the visible tumor. However, with GBM, there are hidden tentacles that lurk in the brain and those tentacles require aggressive and difficult treatments to keep them at bay.
Being at the beginning of their journey with GBM, the family has been inundated with information. It is so overwhelming but thankfully we have been able to provide them guidance to assist when navigating next steps. We will continue to do so and hopefully Dave will be one of the lucky ones to beat this horrible disease!
Dave and Wendy have 2 children, Krystina 23 and Cameron 19. Dave is currently on medical leave during this phase of his treatment plan. Thankfully Dave is stable after surgery, but the initial treatment plan requires Dave to go to radiation 5 days a week for the next 6 weeks. As a result, Wendy has adjusted her schedule to support 12-14 hour shifts 3 days a week to be home as much as possible for Dave and be with him for his appointments. Fortunately, their children are also able to help care for their father. Cameron was attending college in NC but recently decided to return home and attend college locally so he can be there for his family. As with all cancers and life-threatening diseases, the family is impacted as much as the patients.
Nothing prepares you for a GBM diagnosis, but it appears the pathology of the tumor has positive markers that have a better track record responding to treatments and trials. We will remain hopeful Dave will find the right plan to keep him alive for many years to into the future!!
They say Glioblastoma is a rare cancer… but I have to say I am starting to question how rare! In our short time as a foundation, we have supported several local Shoreline CT patients, as well as others across the country. The KARE Foundation’s mission is to provide financial assistance to families, but the medical field needs to continue research to find a cure!
As with every post, thank you donors!! Without your generosity the KARE Foundation would not be able to help these families in their fight. Blessings to all and please keep the Johnson’s, as well as all the other families out there, in your thoughts and prayers!!
Meet the Van Steenbergen Family
For the 1st of our May recipients, the board has decided to deviate slightly from the KARE Foundation mission to help a Guilford, CT family who had their world turned upside down in a second!! This is the story of John Van Steenbergen. John was a great friend to Paul and is a great friend of the Dostie Family and beloved man in the CT Shoreline community.
On July 19, 2022, John Van Steenbergen was in a horrible swimming accident at Misquamicut beach in Rhode Island while having a family beach day with his wife Linda and children. John was swimming with his then 14-year-old son Wiley, when he collided with a powerful wave which knocked him over into the sand below and he became unconscious. Wiley reacted the instant he saw his dad in trouble and used his Boy Scout Water training to position John and move him to shore. Bystanders and lifeguards were able to react quickly. John was taken to Westerly Hospital, where they discovered he fractured his C1 & C2 vertebrae. He was then air lifted to Yale Hospital for surgery to fuse the vertebrae back together. That is just the beginning of the story about a very long and uncertain road to recovery.
Currently, John is a quadriplegic and recently received an implanted phrenic nerve pacer to help him get off the ventilator to breathe. He has been stable and doing a lot of therapy with the pacer to get away from the vent. As of the 1st week in May, we are happy to report John has been without the vent for a week!!! Small but enormous victory!!
John has not been home since the accident. After long treatments, which included a transfer to rehab at Columbia Medical Center, John was then transferred from Yale-New Haven Hospital in January and is now being treated at the VA Spinal Center facility in West Roxbury MA, which is the spinal center for all New England. In the meantime, John’s wife Linda is juggling caring for their 3 children: Wiley 15, Delia 14, and Vivienne 11. It is also important to note their daughter Delia has Down Syndrome and does require additional care.
John retired from Metro North railroad and until the injury, was the primary caregiver to the kids as well and other family members. Linda has been unable to work since the injury, juggling childcare, home accessibility renovations and working through the family’s emotional trauma from the accident. To complicate things even further, Linda and the children are required to make a 2.5-hour journey to see John at the hospital. Unfortunately at this time, there is no timeline when John may be able to come back home…☹
I don’t know about all of you reading this story, but it just seems all so overwhelming. The future of recovery is very uncertain for John, but we are keeping him in our thoughts and prayers hoping at some point he will be able to regain some mobility.
Paul was all about his town and community. The board is certain this would be a decision Paul would wholeheartedly agree with!!! The KARE Foundation is honored to be able to provide some financial assistance to the Van Steenbergen family to help alleviate any financial stress so they can focus on being with their husband/dad to help him be able to return home again!!!
Thank you donors… you make this all possible and are part of the story helping these beautiful families faced with incredible challenges. Blessings to all!
Meet Michael and Laura Cirillo
Connections to our recipients come to us through so many different paths. This month’s recipient is no different. I received a message from a follower of the KARE foundation with a link to a “Fund the First” website for man who was raised in Guilford, CT, Michael Cirillo. Michael was a former policeman, and the fundraising site is for first responders needing financial assistance.
After reading the story… it was once again a sad one… Michael was diagnosed with Glioblastoma. ☹
Mike graduated from Guilford High School in 1989. He went on to college to receive an undergrad in Political Science and Psychology and then obtain an MS in Criminal Justice. Michael started his Police Career in July of 1998 with the Milford Police Department and transferred to the Hamden Police Department in May of 2002. There he spent time in the FBI Task Force and eventually achieved the rank of Sergeant. Michael chose to retire from the Hamden Police Department in September 2019 after 21 years in Law Enforcement and went into Real Estate.
Michael is currently married to his wife Laura. Michael and Laura have been together since 2007 and married in 2014.
On 9/1/21 Michael was diagnosed with a brain tumor (Astrocytoma Grade 3) and had his first brain surgery on 9/30/21. In December of 2022 Michael was given the news the tumor had returned, and the diagnosis was changed to a grade 4 Glioblastoma Multiforme. ☹ After the second brain surgery on 1/4/2023, Michael had stroke-like symptoms which resulted in the limited use of the left side of his body. In addition, his memory has been affected by the tumor and surgery. Laura has taken a leave of absence from work to become the full-time caretaker of Michael while he is recovering from his surgery and receiving treatments to fight this extremely aggressive tumor.
It is also unbelievable to note that Michael’s wife Laura has had significant medical issues of her own. Laura was diagnosed in June 2021 with breast cancer, which required a double mastectomy. The surgery was completed only 3 months before Michael was diagnosed with Astrocytoma in September 2021. Laura’s 2nd surgery for reconstruction was only 2 weeks before Michael was required to have his first brain surgery. Thankfully, Laura is doing well after the surgeries.
All I can say is wow… the challenges some people must endure seem so unfair. When speaking with the KARE board about Michael and Laura’s story, we all agreed they would be our April recipient. Paul would be so proud to know we are supporting a born and raised Guilford “family” member who is fighting this battle with Glioblastoma.
As always, thank you donors for enabling the KARE Foundation to support these families who have battles we cannot even imagine. Please keep Laura and Michael in your thoughts and prayers as they fight the fight with their medical challenges! Blessings to all
Meet the Jacobson Family - Glioblastoma
I cannot even imagine the heartbreak and stress on this beautiful young family living in California. Tears were flowing when I read a post Stephanie Jacobson wrote about her journey with her 36-year-old husband Matt on a Glioblastoma Facebook group page. Below is Stephanie’s entry on Facebook.
“I haven’t posted much here but I’ve followed each and every one of your stories closely. I have found both peace and sadness in knowing there are others out there along the same journey. My husband was diagnosed last July, just one month after we found out I was pregnant with our third. We already have a set of twins at home. I went through virtually the entire pregnancy alone, as there wasn’t much awareness on his part that I was even pregnant. I went to the hospital to be admitted for my c section and delivered our baby girl without him. Although it was the hardest and loneliest experience I’ve ever been through, I’m blessed and grateful he was able to meet his little girl. He seems to have an awareness of who she is as he follows her across the room intensely and lights up whenever I bring her near. A daddy is a daughter’s first love and cancer cannot take that away from her.”
Seriously?!??! How can you not have your heart broken reading this post. As usual, I was curious about the family’s story… I followed her profile on Facebook and discovered they live in CA and she had her baby girl (Brooklynn), on February 24th … the day after OUR daughter had her baby in CA. The thought of her husband not being there for the birth, for the pregnancy and what uncertainty the future holds was just overwhelming to me. In her profile, I saw her friend Christina set up a GoFundMe page. I contacted Christina to learn more about Stephanie and Matt and the rest is history. The board heard the story and we all wholeheartedly agreed this is a family the Paul Dostie KARE Foundation needed to assist.
After the twins were born (Weston and Rylee will be 3 in May), Stephanie became a stay-at-home mom to care for the children. When she became pregnant again, the family was delighted. However, soon after their world fell apart… Matt started having symptoms and he was diagnosed with Glioblastoma. As Stephanie’s story reveals… this was, and IS, a lonesome and scary time for Stephanie and the family. Matt’s symptoms were so severe even after the craniotomy, he had to leave his job and is now on disability. Disability payouts are nowhere near what Matt made in his job.
Only having a disability check as income put so much financial strain on the family. Since he is not able to walk or move on his own, they needed to procure ambulances to get him to his appointments in San Francisco (UCSF), which was over 3 hours away from where they live. That expense was not covered by insurance and VERY expensive out-of-pocket. They also needed to hire medical assistance to care for Matt since his care required a trained medical team. Seeing the financial impact on the family, their dear friend Christina decided to organize a GoFundMe page to raise funds to help them defer some of their out-of-pocket expenses, as well as other expenses for the family.
Matt goes back to UCSF for an MRI on March 22nd so we are all praying he will get some good news and there will be a treatment plan to allow him to continue to grow with his family into the future.
The KARE board thanks each and every one of you donors for your generosity to the KARE Foundation. As a Foundation, we rely on our donors to help keep our mission moving forward. With each tear shed when finding these families in need, the honor of being able to help is beyond rewarding. Paul would be so proud!!
For those who have donated before, we hope you will continue to donate to the tax-deductible Paul Dostie KARE Foundation in 2023 and beyond!! For those who have not yet donated, we hope our mission speaks to you and inspires you to donate and become part of the KARE Family who has contributed to support families like the Jacobson’s!!!
Meet the Scalesse Family - Glioblastoma
A couple months ago, Paul’s wife Jeanne hired a new service manager, (John), for Jerry’s Transmission and Automotive Service in Guilford (the business Paul Dostie owned). John was introduced to the KARE Foundation when a ribbon cutting was held at Jerry’s in November 2022, welcoming the KARE Foundation into the CT Shoreline Chamber of Commerce. During the ribbon cutting, attendees discussed the mission of the foundation. At that time, John had never heard of Glioblastoma or Hypertrophic Cardiomyopathy… until a couple days after when he received a call from a cousin that his uncle Tony was diagnosed with Glioblastoma, a deadly form of brain cancer!!! What are the odds??? John asked Jeanne more about the foundation since his uncle was just diagnosed… and the rest is history!
Tony and his wife Dolores Scalesse were lifetime residents of West Haven, CT until they moved to North Carolina about 10 years ago when they retired. Tony was living the good life; married for 47 years, his 2 sons (Tony Jr. and Steve) lived nearby in NC with their wives and 5 grandchildren. He is an avid Yankee fan and collector and trader of baseball cards. A game and hobby he enjoys with his sons and families. He also really enjoys music, going to concerts and especially summer concerts at their local village park. The pictures illustrate the love this family has for each other. 😊 Retirement life was great.!! Until… things started to change.
In November, Tony started having issues with mobility and speech. The family noticed some of the changes, but Tony is a proud man and continued to say everything was fine… until one day he sat his wife down and told her there was something wrong. Dolores kicked into action and got him to the Drs. where they received the life-altering diagnosis that Tony had a large mass in his brain, and it was a deadly cancer called Glioblastoma. For all of us who have experienced this, it just takes your breath away and rocks your world beyond comprehension. ☹
Tony had surgery to remove the tumor at Atrium Health hospital in Charlotte, NC. The surgeon was able to remove about 95% of the tumor. Tony started chemo and radiation on December 27th and has a couple more weeks to go before moving onto the next phase of treatment. The first MRI is coming up soon and the stress and anxiety leading up to the MRI and receiving the results is excruciating! The good news is the family is seeing encouraging progress with his symptoms since Tony started treatments so we will pray for positive MRI results!!
Every day there is more research and new trials on the horizon for patients with Glioblastoma. I had a long conversation with the family to discuss what we have learned and provided resources to help them navigate the craziness that comes along with the disease. Financial help is just one piece of the support we provide to families.
Unfortunately, we all become bonded in fighting for our loved one’s lives since unless you have experienced having a loved one diagnosed with the disease, it is hard to understand the roller-coaster ride of medical jargon, symptom changes, and financial and emotional stress that greets you each and every day. Fortunately, the KARE Foundation is here to be by their side to help them through their journey.
Like mentioned in past recipient stories, these connections are heaven sent and the KARE Foundation is honored to help the Scalesse family. Thank you Paul for being our guiding light and thank you donors for enabling us to continue to help families like the Scalesse’s. As Paul would say to Tony… “You got this!”
Meet the Skaats Family - Hypertrophic Cardiomyopathy
Imagine you have just become first time parents of a beautiful baby girl… only to find out 5 weeks into her life she is in heart failure and in need of a transplant. This is the story of Nicole and James Skaats from Long Island NY. They received the devastating news their baby girl Mia has severe Hypertrophic Cardiomyopathy (HCM) ☹
What is HCM?? It is the thickening of the walls of the heart. Excessive thickening can cause the heart to become stiff and leaves less room for blood to fill the heart. In severe cases, a heart affected by severe thickening of the walls causes an obstruction of blood flow, and the heart must work harder and may have difficulty pumping oxygen-rich blood out to the rest of the body. In severe cases, a transplant is the only option.
Mia was transferred to Columbia Presbyterian Hospital in NYC at 5 weeks and is now 2 ½ months old waiting for a heart. The anticipation and joy of having your first baby has been replaced with fear and anxiety knowing Mia’s life is hanging on a thread and dependent on a new heart to keep her alive. As bad as it is knowing your baby needs a heart, is the pain of knowing another baby will have lost their life to make it happen. ☹
With every passing day, the panic gets more real for the family that the disease is progressing. James is a mechanic, (like Paul was), and Nicole is a nurse in a Long Island hospital. As a nurse, thankfully Nicole will be able to navigate the medical jargon they are being bombarded with regarding HCM and what medical hurdles will be met once a transplant is received. Nicole is on maternity leave until February. In the interim, family and friends helped them find a short-term rental near the hospital so they can be by their baby’s side. Unfortunately, James has just returned to work, and this has complicated their living situation with additional expenses since Nicole needs to be near her baby in the hospital.
The family is also still researching whether their health insurance will cover the costs for Mia’s medical care since their coverage is through a different hospital system Nicole is employed through. Paul and Jeanne had the issue when Allie received her 1st open heart surgery at the Mayo Clinic in Rochester, MN. They were told the medical care was covered… only to find out after the surgery most of the major expenses were not. It was an incredibly hefty bill that was not anticipated or budgeted for. Unfortunately, this happens all too frequently… When you are in the throes of your loved one desperately needing medical treatment, families will do whatever it takes at whatever the cost. Timing is of the essence getting accurate information from insurance companies but that is not always the case.
We learned about the Skaats family through a family friend who knew Mike Papale from his In a Heartbeat Foundation. Mike contacted me and provided me the family contact information. I spoke to James’ sister Christine about the family’s situation and after that conversation, the board met and agreed the Skaats family had to be our next recipient for KARE Funds.
The KARE Foundation is hopeful Mia will receive a heart soon and James and Nicole can then move forward focusing on being parents to this sweet baby girl and watch her grow into a beautiful woman. We are once again honored to be able to help in some small way to alleviate some financial stress on the family all because of our generous donors. Thank you!!!
Please keep Mia and the family in your thoughts and prayers.
Meet Caleb and Danielle DeBord - Hypertrophic Cardiomyopathy
As part of finding candidates, I review many different Glioblastoma (GBM) and Hypertrophic Cardiomyopathy (HCM) group sites to discover if there are any entries that appear to be someone who could fit the mission for the KARE Foundation. This is how I discovered Caleb DeBord. Caleb is our November recipient with the same HCM heart condition as Paul’s daughter Allie.
Caleb is a 22-year-old young man who was diagnosed with HCM when he was 13 years-old. He loved to run and wanted to join the high school cross country team. During his sports physical, the Doctor discovered a heart murmur and after further investigation and testing, diagnosed him with HCM. Caleb was crushed because he could not join the team, but he was also very scared that he had this serious heart condition and what did that mean for how he would be able to live his life!! A couple years later he received and internal defibrillator (ICD). In the event his heart stopped, the ICD would hopefully kick it back into action.
Soon after learning about his heart condition, Caleb’s mother was diagnosed with stage 4 stomach cancer. Unfortunately, she passed soon after. ☹ Caleb, his father, and brother were not only grief stricken about the passing of their mother, but also scared about Caleb’s future with HCM.
The availability and cost of medical insurance has always a challenge for the family. The out-of-pocket expenses were significant. When Caleb was able, he applied for state medical assistance in Indiana where he resided, and the cost and coverage of the plan were manageable. He was able to qualify since he could only work part-time since he had physical restrictions due to HCM.
Back in July this year, Caleb fell in love and married Danielle. When that occurred, the state dropped him from the insurance plan since as a couple, they made too much money. (Which I must say, IS NOT enough to keep them afloat with all the medical bills incurred by Caleb.) Since they were married, Danielle researched options to put him on her medical plan. Unfortunately, the plan had an extremely high deductible, and the monthly cost went up significantly if they added Caleb to the plan. This was a hardship they could not afford.
Caleb posed a question to the HCM Group asking for suggestions regarding insurance options and that piqued my interest. After contacting Caleb to understand his story, the KARE Board knew we could help this young man and his wife to alleviate some of the financial stress covering the out-of-pocket expenses for their health insurance!
Caleb was beyond grateful for the “out of the blue” contact I made with him and for the board to approve him as the November recipient for KARE funds. They did not know where they would get the money to cover the out-of-pocket expenses and now… they do not have to worry about that. 😊
The KARE Foundation is hopeful Caleb will live a long life as new treatments become available for HCM patients. Caleb and Danielle recently moved from Indiana to Chicago so he could be closer to the HCM Center of Excellence medical facility. Illinois may also have better insurance options for Caleb as well as medical trials that may be available to him. It is also a blessing that both Caleb and Danielle quickly found jobs in the Chicago area!!! We are soooo happy for them… a new start and hopefully a new beginning for both.
The KARE Foundation is honored to know we are helping Caleb and Danielle get a better start in their marriage not having to worry about the medical expenses required for Caleb.
THANK YOU donors for making it all possible!!!
Once again, we were blessed to be introduced to the Craft family by a person who heard about the Paul Dostie KARE Foundation and contacted us to see if we could help.
It all started when Jimmy Smith, (pictured on the bottom left), a member of the St. Mary’s church family in Clinton, CT, contacted the foundation about the cantor of their parish being diagnosed with Glioblastoma (GBM). We connected with Jimmy and heard the story of John Craft and knew he would be our next recipient.
Life can be so complicated, and that is the case with the Craft Family. John Craft was diagnosed with GBM in June 2022. John has recently completed chemo and radiation and is awaiting the next step in his treatment journey. Currently, due to symptoms from GBM, John requires a wheelchair and is unable to drive. To complicate matters even further, John’s wife Rosalind “Ros” (picture upper left), has severe Multiple Sclerosis and is wheelchair bound. Both John and Ros are teachers at a private boarding school in western CT. They also have twin 11-year-olds (Saoirse and John-Donald “JD” pictured upper right), who attend the school with them.
If you are familiar with the geography of CT, the family lives in Naugatuck, work in Litchfield and then John cantors and the family attends the church in Clinton. There is a significant mile spread between each location. With John now on medical leave and unable to drive, the family is dependent on assistance for any travel to and from treatments and work. Fortunately, they have been able to secure transportation for both with the generosity of friends and family. John is also on leave as cantor from St. Mary’s and unfortunately GBM has impacted his ability to sing. As a man who loves teaching music, history and drama and being cantor at the church he loves, this is difficult change for him. However, John remains positive and will do whatever is required to fight the disease. He is a man of great faith and that will be his anchor during his journey with GBM.
The KARE Foundation is honored to be able to financially assist the Craft family to help alleviate some of their stress during his fight against GBM. The connections we make with these beautiful families are hard to quantify… but we all have the connections with loved ones fighting these diseases and remain hopeful for new treatments to have everyone live their best lives! Emotional and educational support is as important as the funds they receive.
We have been fortunate to find some families who have heard about the foundation through friends and family. If you know of anyone meeting the mission of the foundation, please send them our way.
EVERYTHING the foundation is able to donate to families is due to generosity of our amazing donors!!! Thank you… and please keep the Craft family in your thoughts and prayers as John tackles this beast called GBM.
Meet the Craft Family - Glioblastoma
Meet the Sharpe Family - Glioblastoma
Once again there was a higher power making the connection with our latest recipient…
While reading through a Glioblastoma (GBM) group Facebook page, a question was asked about the progression of the disease, which was similar to what occurred with Paul. I clicked into the home page of the person who submitted the question and saw there was a GoFundMe page sponsored by the daughter for her mother. When clicking on that link, the story tugged at my heart (yet again!) and I knew this family met the mission for the KARE Foundation.
I contacted the daughter, Sabrina Sharpe Morris, and we discussed the challenges facing her mom Pamela (Pam), from a physical, emotional, and financial perspective. I shared the information with the KARE board members, and we agreed Pam Sharpe would be our September recipient for KARE Funds. Below is an overview of Pam and the family’s story.
On Sept 11th, 2021, the Sharpe family lives forever changed. How ironic on such an earth-shattering day for America 20 years before!!!
The story begins when Pam noticed her fingers were mistyping words on the keyboard, which rapidly progressed to losing fine motor skills and mobility on her left side. Overwhelmed with anxiety and fear, her daughter Sabrina convinced her mom to go to the local Emergency Department (ED) as her presenting symptoms would indicate a need for an MRI.
Scared and alone in the ED due to COVID restrictions, Pam was informed that she had a brain tumor the size of a baseball. Never once did she experience a headache, but now all those random falls she had been experiencing made more sense. Pam underwent a craniotomy on 9/16/2021, and on her husband’s 57th birthday, 9/19/2021, their worst fears ware confirmed the mass was a malignant and aggressive form of brain cancer. Weeks later, pathology confirmed it was Glioblastoma. Pam’s tumor was MGMT unmethylated, wild-type IDH1. This is the same as Paul. What this means is traditionally the tumor does not respond to standard of care, otherwise known as chemotherapy and radiation - which hers did not. On 12/31/2021, Pam had her first MRI, which showed regrowth. Since then, her bimonthly MRIs continue to demonstrate progression of tumor(s).
Pam, a dedicated healthcare worker in upstate New York since her teens, was recently terminated from her job due to being on disability for over one year and her insurance was also terminated effective 8/25/2022. Even though Pam was eligible for COBRA and paid the premium, Excellus BCBS did not receive the termination letter of her employment until last week. (9/16/22) Therefore, the family was required to pay the premium and still pay out-of-pocket for her medical expenses during that lapse in coverage. The financial burden was significant since the cost of Pam’s treatments were extremely expensive. In addition, the monthly cost having COBRA is a significant hit to the family budget.
On 8/31/2022, the oncologist informed Pam the infusions she has been receiving were not working. They also told her there were no other treatment options in New York State. Her next step was to seek trials outside of New York, which requires travel fees and out-of-pocket expenses. Furthermore, on 8/30/2022, Pam suffered her first of now several seizures since her diagnosis. The family was informed this is another symptom of progression.
Pam’ daughter Sabrina was to be married but when the bad news was received about the tumor progression, Sabrina moved up her wedding date to May and thankfully Pam was able to attend!!! As many of you know, Paul’s daughter Kristen was to be married a couple weeks after he passed. Once we knew he was going to pass, the family got everything rescheduled to have the priest marry Dylan and Kristen by his bedside. However, knowing Paul, he did NOT want Kristen to get married under those circumstances. He passed a couple hours after being home so did not make it to the next day when the wedding was to be rescheduled. Paul wanted nothing more than to be there for her wedding. We all know he was not there in human flesh on her original wedding date, but he was certainly there in spirit!!! Thankfully Pam was able to be part of her daughter’s special day!!!!
When hearing the many challenges patients and families face with Glioblastoma, it is heart wrenching and brings back so many horrible memories. ☹
When speaking with Sabrina, the financial challenges have been many and the KARE Foundation is humbled to help alleviate some of their stress. We will continue to pray the next option for Pam will be successful so she can be with her family well into the future. The KARE Foundation is beyond grateful and blessed with our donor “family” so we can continue to help other families in their fight against this horrible cancer!!!!!
Meet the Silvestrini Family - Glioblastoma
The Paul Dostie KARE Foundation has been blessed to be introduced to our next recipient through Gin and Chris Stroscio. Chris is the police officer who has Glioblastoma (GBM) and the board, (recently announced through the KARE Facebook page), provided funds to help the family with their dream vacation to Disney World with their 13-year-old daughter.
Our next recipient, Matt Silvestrini, is also a police officer and worked with Chris in New Haven until 2012, when Matt moved to the Middletown Police Department. For a brief summary of Matt’s life prior to diagnosis; he joined the Army Infantry after 9/11 and was deployed to Iraq, got married in 2003 to his wife Ashley (while still in the service), started his career as a police officer in 2008, had a daughter Abby born in 2011 (who was diagnosed as a Type 1 Diabetic in 2014), and a son Walker in 2013. With Abby’s diabetes diagnosis, Matt’s wife Ashley needed to stay at home to learn how to care for and monitor her daughter’s blood sugar. As a result, Matt worked long and grueling hours to provide for the family.
Matt was also passionate about health and fitness and was an athlete who competed in Ironman and ultra-marathon races. Obviously, Matt is one who has endurance and has lived a healthy lifestyle.
Matt was diagnosed a little over 5 years ago with grade 3 Astrocytoma. He thankfully had clean scans for 5 years, but on the 5-year anniversary date of his initial diagnosis in November, they found tumor regrowth. This news was devastating. Matt underwent his second craniotomy for removal of this tumor in January 2022. Unfortunately, when the pathology came back … the tumor was now a grade 4 GBM. ☹
Soooo… not only are Matt and Chris partners in blue, but they are also now partners fighting the fight to beat this horrible cancer!!!!! Also fighting this fight are their wives as primary caregivers, Gin and Ashley.
After Matt’s diagnosis with GBM, the neurooncologist put Matt on the same clinical trial as Chris. Unfortunately, the trial was unsuccessful for Matt since he had regrowth of the tumor. With options running out, the doctors switched the plan and put him on twice monthly Avastin infusions. (Paul was also on Avastin). However, the Avastin infusions did not work since he once again had additional tumor growth. The Doctors at Yale advised Matt to seek out treatment options at Dana Farber in Boston since they had no other treatments available for him. This was in mid-July 2022.
Fast forward a couple weeks to August… Matt and his wife Ashley went to Dana Farber. After the review at Dana Farber, the neuro oncology team felt he should have another craniotomy (now his 3rd!!) to remove the tumor from his frontal lobe. It was coordinated with Yale and Matt was set to have his surgery on Weds, August 17th. The surgery was successful to remove most of the tumor, but the struggle now is to mitigate any regrowth. That is situation Matt and Ashley are in today as he heals from his latest surgery.
The stress of the unknown for the future is overwhelming to Matt and Ashley. Ashley is now required to take leave once again from her job to care for her husband and family. The future will hold trips to Boston and/or other medical centers who specialize in the type of treatments Matt will need once they determine his next options.
The KARE Board is honored to be able to help this beautiful family by providing funds to alleviate some of their financial stress. The KARE Foundation is blessed to have so many generous donors who make this possible. Thank you and please pray for the Silvestrini family… the fight begins again, and we hope whatever next treatment option will work for Matt!
Meet the Kress Family - Glioblastoma
Living the dream… that was 47-year-old Becca Kress’ story. She was in the prime of her life with a job she loved, happily married to her husband Brent, with 2 beautiful daughters ages 21 and 23, (the 23-year-old just got engaged and is set to be married in August of 2023), 3 wonderful step-children, and then BOOM… in February of 2022 she had a seizure that landed her in the hospital, which led to some memory loss and trouble finding the right words when speaking.
The initial diagnosis was encephalitis (swelling on the brain) and she received treatment to reduce the swelling and help with the seizures. This appeared to help some of the symptoms. Becca recovered enough to return to work full-time after about 8 weeks. Then suddenly late June of 2022, she began having tremors in her right hand/foot and terrible aphasia which landed her in Abbott Northwestern Hospital in Minneapolis, MN where she was notified she had Grade 4 Glioblastoma (GBM) brain tumor in her left temporal lobe. Unfortunately, misdiagnosis happens all the time with GBM… since the symptoms can be so many other disorders and GBM seems to be the last thing they look for. ☹
How life can change in an instant!! On her 13th wedding anniversary on July 11th, she underwent surgery to remove the mass which was successful. On July 13th she was told of the diagnosis but as all GBM patients are warned… the tentacles of the cancer are throughout your brain and only waiting for the opportunity to grow… and grow quickly with devastating consequences.
As a newly diagnosed GBM patient, your world swirls with all the information you receive like… what is the best path forward?? How to plan for the future when Drs give you the life sentence of 12-16 months?? Will I be there for my daughter’s wedding?? How are we going to pay our bills if I cannot work? ETC… It is way too much to process but Becca is taking on this challenge like a true warrior and willing to fight the fight for her life! She will be starting chemo and radiation soon and after the 6 weeks, will enter a trial to continue her fight! Her amazingly positive attitude about this journey is outstanding. Don’t let the cancer take you over… you take over the fight with the cancer!!!
As with all our candidates…we seem to have some higher power working with us! The connection to Becca was made through a family member of my brother Brian’s wife, Kris. This family member worked with Becca’s sister Tammy and saw on her Facebook page, a post to a GoFundMe site for her sister who was diagnosed with GBM!! I was given Tammy’s contact information and the connection was made!!!
When I spoke to Tammy, I knew Becca and the family would be perfect to receive KARE funds. The board approved Becca as the next candidate and we are honored and humbled by the generosity of our KARE donors that another family will have some financial relief to enable them to focus on their fight. The KARE Foundation may be the messenger to these families, but the KARE donors are the key to make it happen!
Please pray for Becca and the family as they begin this journey!!! Once again, the Paul Dostie KARE Foundation cannot thank our donors enough for supporting our ability to help others become a reality. Paul is one happy camper up there seeing all the good happening in his honor. 😊 As Paul would say…”YOU GOT THIS BECCA”!!!!
Meet Hailey Ortiz - 2022 Trades Recipient
As part of the KARE Foundation mission, the board also wanted to keep Paul’s legacy alive by supporting young adults interested in entering the trades. Paul would be so honored to know the Foundation is helping to provide financial support to KARE recipients which will enable them to get a start in their technical careers.
For this school year, we are so happy to announce that Hailey Ortiz is the recipient of the 1st Annual Paul Dostie KARE Foundation Apprenticeship/Scholarship! For the 1st inaugural year selecting a recipient, the board was focused on finding someone interested in becoming a mechanic since Paul was a life-long transmission/automotive mechanic, taking over his father’s business started over 60 years ago.
As a board, we feel the connection to Hailey was “heaven sent” to the KARE Foundation!!! Hailey is the "backyard mechanic" we were looking for and we are delighted to help her get a start in her career. We knew she was the one when she told us about her current project restoring a 73 Ford pickup. It was so evident to the board that Hailey has the passion to learn everything about anything automotive. Paul would have been so proud to have her, especially as a young woman looking to start a career as a mechanic, to be the recipient of this of this apprenticeship/scholarship. Hailey is a rising senior in the Middletown VOAG program.
Hailey will be starting a paid apprenticeship this summer (hopefully to continue through her senior year and into a full-time job) at Paul’s business, Jerry's Transmission & General Automotive Service in Guilford, CT. She will also receive a tool cart and starter set of tools as part of the scholarship.
We hope this apprenticeship will work into a life-long career for Hailey and we are so proud to have her join the Jerry's team!! We know Paul is beaming with delight! This award is going to the perfect recipient.
Thank you donors for enabling the Paul Dostie KARE Foundation to make a difference in people’s lives. We could not do any of this without you!
Meet The Robinson Family - Glioblastoma
Challenges seem to impact some people more than others. ☹
As a young woman hoping to start a family, Sara Robinson and her husband Andy dealt with the emotional roller-coaster having issues starting that family. After many months, they were able to get pregnant via IVF and had their beautiful baby boy Luke. They wanted to grow the family so when Luke was a year old, they did another IVF procedure and Sara was pregnant once again. They were delighted. Life was good!!!
However, during IVF therapy Sara was tired, slept a lot and had headaches but she chalked it up to hormones. When she became pregnant, Sara was still having these symptoms but also had issues with her legs starting to randomly give out and getting sick to her stomach. Andy took her to urgent care twice, but the Drs said that she was just having migraines. This went on through the months of May and June 2021. On July 4th weekend, Sara and Andy were on a golf course when Sara collapsed. One of marshals on the course witnessed her collapse and approached Andy. He was an EMT and told Andy his wife is having a seizure and she needed to get to the ER immediately. This was July 3rd… On July 5th, Sara was in surgery. The surgery went well but the pathology of the tumor revealed she had Glioblastoma (GBM). As you can imagine, this was devastating news to Sara, Andy and the family!!
Two weeks after the surgery, Sara miscarried the baby, which came with so much emotion. Their life’s journey changed in an instant along with their hopes and dreams. ☹
Unfortunately, Sara is still experiencing seizures. Andy was a pilot who was furloughed during COVID and after starting back, had to take a leave of absence from his job to be with Sara and baby Luke. The risk of something happening to Luke and/or Sara if she had a seizure while taking care of him was too daunting. Sara has also been on medical leave but is now able to work remotely up to 10 hours a week. As you can imagine, the financial strain is extremely difficult for the family. However, they have been working hard to be present and thankful for each and every day.
How the Paul Dostie KARE Foundation was introduced to Sara is heaven sent. Sara’s mother Dale is a CT native and lived in Madison Connecticut for 11 years before she moved to Vermont 24 years ago. Dale heard about the Foundation through social media and contacted the Foundation through the KARE website. When we connected with Dale and heard the story, the KARE Board knew this would be our next GBM recipient. We are honored to be able to provide financial support to enable Sara and Andy to focus on doing what is required to beat this cancer and for Sara to live a long life.
THANK YOU DONORS!! As I said before, you ALL have a hand in the financial assistance we are giving to these beautiful families in need. BLESSINGS TO ALL!!!
Meet the Pugh Family - Glioblastoma
Imagine you are on a family vacation in Orlando at SeaWorld with your wife Kristen and 3 young children; son Asher and daughters Abigail and Lillian (7, 8, and 9 years old), when out of nowhere, you black out, only to awake being taken to the hospital for evaluation. That is certainly not what the family ever imagined would have happened, but it did to Jarrod Pugh in August of 2021.
As part of the triage, the hospital performed a CT scan and the scan revealed a mass in Jarrod’s brain. The hospital decides to do an MRI to investigate further, and the life changing results were given to Jarrod and his wife Kristen… he had Glioblastoma (GBM)…a non-curable brain cancer. How could it be? He was a healthy, 38-year-old with no prior symptoms! From that moment on, life as they knew it changed. Most people who are diagnosed with GBM have no idea what it is!
Jarrod returned to his home state of West Virginia where he and his family started researching information about the disease. Fortunately, Jarrod has a sister in the medical field, and she helped get Jarrod into Duke Medical Center in N.C who specializes in GBM for his surgery. It is important to note, there are very few hospitals who specialize in this type of brain cancer surgery and treatment. Thankfully his surgery was successful, but the journey continues since GBM is relentless. It was noted after further tissue study of the tumor, the type of GBM Jerrod is affected with is a form called Astrocytoma. The outcome is still the same…. it is a non-curable brain GBM brain cancer.
Jarrod, lovingly referred to as “The Hulk”, finished his chemo and radiation at Duke in January and is now in the process of finding the right ongoing treatment plan. (Picture with the family above)
Unfortunately, the limited insurance Jarrod had did not cover any medical expenses outside his home state. The cost for the surgery was tremendous but his family kicked into gear to assist with some of the expenses and started a GoFundMe Page. A family will do whatever it takes to get the best treatment for this rare and complicated disease.
This is where our story with the Pugh Family begins.
God works in mysterious ways and the path that led us to the Pugh Family is nothing short of a circle of relationships bonded by the pain of losing a loved one from this horrible disease.
Our story starts with Paul’s journey at Duke for his treatments for GBM. During this time, we virtually met Norm and Susie Blanchard . Norm was the same age as Paul and diagnosed a couple months before him at Duke. Unfortunately, Norm passed a couple months before Paul. Neither met each other since their journey fighting GBM was during COVID.
A couple months after Paul was diagnosed with GBM, Trey Kuhn a 21-year-old young man, whose mother is from Paul’s hometown and a friend of the family, was diagnosed with GBM and was treated at Duke. After Trey’s passing, the Kuhn Family requested donations to be made to the KARE Foundation.
In Norm’s memory for what would have been his 60th birthday on April 5th, Susie requested donations be made to a couple of her favorite charities, one of which was the KARE Foundation. The other was to the Pugh Family’s GoFundMe page.
When the KARE Foundation board reviewed the GoFundMe story Susie selected to support for Norm’s 60th birthday, the KARE Board knew this family was a perfect candidate meeting the mission of the Foundation. We also knew the funds to be used for the family would be funds received to KARE in memory of Trey!!!!
The board cannot begin to thank our generous donors enough. Your donations ensure we can continue to give back and help other families like the Pugh’s in their fight against GBM!!
Meet Trey Kuhn - Glioblastoma
Life Can Be Fleeting…
Trey’s mother Cindy was from Paul’s hometown and a friend of the family. Who would have thought her beautiful son would be diagnosed with Glioblastoma just before his 21st birthday during Covid. Trey lived in North Carolina and was sent to Duke for his brain surgery, where he was connected with Paul… who was also being treated by Duke. The bond between Paul and Trey was instant! As they fought this terminal cancer, they remained positive and “healing buddies'“ throughout their fight.
The Kuhn family did not need funds from the KARE Foundation as they had the means to cover costs. However, the Kuhn’s have been great advocates for the Foundation and with Trey’s passing, have requested people send donations to KARE so Trey’s legacy can help others in their fight against this horrible disease.
The KARE Foundation cannot thank the Kuhn family enough for the outpouring of donations we have received on Trey’s behalf. If there is any silver lining in the grief we all feel, it is we are able to help others in need and keep our loved ones memories alive.
Thank you donors!
Life is precious and we need to live every day to the fullest. As donors, you are enabling the KARE Foundation to help those with these life threatening diseases alleviate some of their financial stress so they can focus on their time with family and healing. Blessings to all!!!
Meet the Longo Family - Hypertrophic Cardiomyopathy
Their Journey with HCM begins…
Can you imagine how it rocks your world as a parent to hear the news your 9-month-old has heart murmur and after a visit to the cardiologist at 11 months, find out their son has a life-threatening heart condition called Hypertrophic Cardiomyopathy (HCM)?? Those were the words Frankie and Bessie heard from their son’s cardiologist in June of 2021. Frankie and Bessie had never heard of HCM. How could it be? It turns out since HCM is a genetic disease, the family was sucked into a whirlwind of doing research and having multiple tests performed on their son Louie, as well as for themselves as parents and Louie’s 3-year-old sister Theodora (Teddie). Thankfully the rest of the family appears not to have HCM, but it did not take away the fear they felt for their baby boy.
The KARE Foundation was fortunate to connect with the Longo family through Mike Papale from In A Heartbeat Foundation. When KARE was looking for HCM patients to support during American Heart Month in February, Mike reached out to cardiologists at Connecticut Children's Medical Center. Mike received word of a family in need at CCMC who met the Paul Dostie KARE Foundation mission.
KARE Board members Linda Kelly and Jeanne Dostie contacted the Longo on February 17th to learn about their story. After a lengthy and rewarding conversation with the family and with authorization from the other KARE board members, the Foundation approved the Longo family to receive KARE funds for financial support.
During the conversation, Jeanne was able to offer sage advice based on her experience with her daughter Allie, who has been fighting HCM since birth. The conversation provided the parents a glimmer of hope for Louie’s future living with HCM. Jeanne and Paul were told by doctors when Allie was born to be prepared to have her lose the fight before her 1st birthday!! It is not without hurdles and bumps in the road over the years… but Allie is still here at 24, and still has her own heart!
As a young child with HCM, having an Implantable Cardioverter Defibrillator (ICD) is not an option for Louie. However, his risk is high for a cardiac event due to the size of the muscle and obstruction in his heart. When speaking with the Longo family, we asked if the Doctor was able to get insurance to approve the family to receive an external defibrillator (AED). The response was very discouraging since Louie has not yet had an “event”, the doctor said he would not meet the criteria. When the Longo’s asked the doctor if she had a child with his condition, would she have one… the answer was “Yes”. It is sad to note that with HCM, the first “event” could be the last!
That statement got Linda and Jeanne’s attention and they knew what they had to do next! They contacted Mike Papale from In A Heartbeat and he agreed to share the cost of getting an AED for the Longo family!!! The mission of In A Heartbeat is to provide AEDs to those in need. This was the perfect partnership and a perfect opportunity to give the Longo family a peace of mind knowing they will always have this lifesaving device available.
The conversation has started with the Longo family but is not over. The KARE Foundation will make sure we are available to them for continued support, just like we are with our other recipients. Stories like these will continue due to the generosity of our donors. Thank you all from the bottom of our “hearts”.
Please consider making a donation to the KARE Foundation. The funds received will continue our mission to provide financial, as well as emotional support, to others in need.
Meet the Osterberg Family - Hypertrophic Cardiomyopathy
A Story of the “Heart”
Not only is February Paul’s birthday month, but it is also American Heart Month. Paul’s daughter Allie has a serious heart condition called Hypertrophic Cardiomyopathy (HCM), another life-threatening illness for which there is no cure. The ever-looming next step will be a heart transplant. (Unless science can find another option).
This story is lengthy, but it provides the background for finding and selecting our latest recipient.
Allie has endured 3 open heart surgeries in her short life, the last of which was April 1, 2019, exactly 6 months before Paul surgery to remove his Glioblastoma (GBM) brain tumor. Due to the complexity of the surgery, Drs. put Allie on the transplant list in the event the surgery was not successful. THANKFULLY it was successful and as a result, Allie will continue to keep her own heart longer. (Transplanted hearts do not last forever so the older a patient can be, the better).
For anyone who knew Paul… his tag line was #ALLIESTRONG. He was relentless in his support for making sure his daughter had the medical support she needed and knew the journey for Allie was still going to have bumps in the road. To keep that relentless charge moving forward, the board decided in honor of Paul’s birthday in February and being American Heart Month, the next recipient would be a person fighting HCM.
To find the next recipient, we contacted Mike Papale, President of the In a Heartbeat Foundation in Wallingford CT. We learned about Mike when being interviewed by Rich Coppola from Channel 8 news. Rich was talking about a young 17-year-old fellow he knew from basketball who “died” on the basketball court but was saved by someone knowing CPR. At that time there was no Automated External Defibrillator (AED) in the building. Turns out Mike has HCM like Allie. In a Heartbeat is an awesome foundation started by Mike. He raises funds to donate AEDs to places that need them, as well as provide services for other heart related issues. Since the interview, Allie and Mike have met to discuss their fight with HCM.
We knew Mike had relationships with many hospitals in CT so we decided to see if he could help us find our next recipient and he did!
The board has approved to provide KARE Funds to the Osterberg family. Julianna Osterberg (Jules), is a 17-year-old with HCM being treated at Yale New Haven Hospital. Unfortunately, Jules has recently been put on the transplant list after doctors discovered the only surgery that could possibly help Jules keep her own heart would not be feasible. In addition, Jules’ father Dave was diagnosed with metastatic lung cancer in early December, which was also found in his liver. To make matters even worse, after a brain MRI the day before Christmas Eve, Dave received the news confirming he has a brain aneurysm. The medical team is in the process of determining next steps for his treatment plan. As you can imagine, the stress on the family is tremendous on so many levels.
The parallels of a father and daughter fighting for their lives are not lost on the KARE Foundation. The financial strain on the family is significant so the assistance KARE is providing to the Osterberg family will hopefully alleviate some of their financial stress so they can focus on fighting their diseases.
To provide details about the Osterberg’s story, Jules’ mother Pam was diagnosed at 27-years-old with HCM when she was pregnant with Jules after having symptoms. Fortunately, over the years her HCM has remained stable. However, as a genetic disease, the threat was there for her children. At 3 years old, Jules told her mom she felt her heart beating in her head. This alarmed Pam knowing she had HCM since it is a genetic disease. After a visit to the pediatric cardiologist, Pam and Dave were given the devastating news that Jules had HCM as well. Their other daughter Liv has been tested and as of now does not show signs of HCM.
Unfortunately for the Osterberg’s, each year Jules heart progressively got worse and worse. Jules endured several surgeries, to include the placement of an Implantable Cardioverter Defibrillator (ICD) and changes to the ICD with some complications. Hearing the news that the only option left is a transplant has been very hard on the family and extremely frightening for Jules. In addition, the latest horrific news about Dave’s cancer and brain aneurysm has been devastating.
Included above with photos of the family, the picture is a drawing by Jules after she was told she needed a heart transplant. The illustration is profound and tells her emotional story completely… no other words are needed.
Having KARE funds help the Osterberg family is truly a GREAT birthday gift for Paul and an honor for the KARE Foundation.
Tom West passed on 1/31/2022 from this beast called Glioblastoma after a 22-month fight. He declined rapidly and the family was not expecting him to pass so quickly. He did tell his mom the day before his passing that he was ready to go… ☹ As you can imagine, his family and friends are devastated.
It is comforting to know that Tom was cognizant when he and the family were notified a couple days before his passing that they were approved to receive KARE funds. This news will never get easier to communicate but it just reinforces the mission for the Paul Dostie KARE Foundation.
Words from Tom’s cousin Tracey who started a GoFundMe page for the family. “We cannot thank you enough for reaching out & for your generous donation. I’m so grateful you saw Tom’s GoFundMe page, what a blessing your family has been to mine.” In addition, Tom’s mother Brenda’s message to KARE Foundation. “We will never be able to thank you and the foundation enough for your generous donation to the Tom West Family. Tom was the best son I could have ever hoped for and I will miss him so much. Your donation will make it easier for Sonia and Cole during this sad transitional period. Thank you so very much.” Sonia and Cole, Brenda Cole-Etter and Tracey Spence.
Meet the Tom West Family - Glioblastoma
After a 20-month fight with Glioblastoma, James Forchielli from Clinton, CT, just 2 towns away from Paul’s family, passed on January 24th, 2022. Seeing James’ decline during the progression with the disease was very hard on the children and family. His final breath was taken in Hospice with his wife and parents by his side.
Thankfully the KARE Foundation was able to donate funds to the family in December 2021, which provided some relief from the significant financial toll taken during the fight against the disease.
The Forchielli family was very appreciative of the support from the community and the KARE Foundation during this horrible journey. Our hearts go out to the family and friends as they now navigate their lives without their father, husband, son and friend.
Once again, we cannot thank our donors enough for the support to enable the KARE Foundation to help others in need.
Meet the Forchelli Family - Glioblastoma
Unfortunately, our 1st recipient Kyle Coddington passed on Dec 2nd, 2021. He was 25 years old. The downward spiral happened fast for Kyle, just like with Paul. We were hoping Kyle would beat the odds fighting this disease but unfortunately glioblastoma won. The roller-coaster of emotions one is faced when dealing with a loved one struck by Glioblastoma is very hard to handle...
This disease not only affects the person fighting the cancer, but also puts an incredible emotional, physical and financial strain on the family. The Coddington family was so appreciative of the generous donation received from the KARE Foundation before his passing. As sad as we are about Kyle's passing, we are comforted the KARE Foundation was able to help the family to offset some of the financial burden accumulated during his medical journey to fight the disease.
Below is a message from Kyle’s mother Melinda after he and Emily received the funds.
“What an amazing blessing! Kyle did not have life insurance and we have been praying for God’s provision. Thank you does not seem like enough to say. Thank you so much, again, for your care and support and kindness. Even in this, God is always good”