2023 Recipients
Meet the Scalesse Family - Glioblastoma 2023
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 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 Michael and Laura Cirillo - Glioblastoma
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 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 the Johnson Family - Glioblastoma
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 Frazenbaker Family - Glioblastoma
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 Tasto Family - Cancer
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 - Trades 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 - Glioblastoma
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 Jessica Leichtweisz - Glioblastoma
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 Malave Family - Glioblastoma
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 Audrey Lloyd - Hypertrophic Cardiomyopthy
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 Laveck Family - Blood Cancer
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 the Warne Family - Glioblastoma
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 Angela White-Davis - Hypertrophic Cardiomyopathy
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!