2021 and 2022 Recipients
Meet Kyle and Melinda Coddington - Glioblastoma 2021
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”
Meet the Forchelli Family - Glioblastoma 2021
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 Caleb and Danielle DeBord - Hypertrophic Cardiomyopathy - 2022
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!!!
Meet the Tom West Family - Glioblastoma 2022
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 Osterberg Family - Hypertrophic Cardiomyopathy 2022
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.
Meet the Longo Family - Hypertrophic Cardiomyopathy 2022
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 Trey Kuhn - Glioblastoma 2022
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 Pugh Family - Glioblastoma 2022
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 The Robinson Family - Glioblastoma 2022
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 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 Kress Family - Glioblastoma 2022
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 the Silvestrini Family - Glioblastoma 2022
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 Sharpe Family - Glioblastoma 2022
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 Craft Family - Glioblastoma 2022
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 Skaats Family - Hypertrophic Cardiomyopathy 2022
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.