Recipient Stories

Callie Shaw

At 28 weeks gestation Callie was diagnosed with complete AVSD. She was born at 36 weeks weighing 6lbs. She went into heart failure about a month later. She was put on meds and a feeding tube to help her gain weight and buy time to get her bigger for a more successful surgery. She spent more days inpatient than at home the first 3 months of her life. Just shy of 3 months old, at only 9lbs, she had her first open heart surgery to repair the AVSD and create a mitral valve. Less than a month later she would need another open heart surgery to place a pacemaker due to being in 4:1 heart block. Her valve that was created was very leaky and caused alot of damage to the left side of her heart. Just shy of her 2nd birthday Callie had open heart surgery number 3 which resulted in a mechanical valve being placed. During this she suffered a paralyzed diaphragm, collapsed lung, and stroke among other things. She suffered more stroke like activity this past August where she lost a majority of her speech and language. She is 4 and doing amazing for all she has been through.  She will need more surgeries during her lifetime. She has permanent damage to her left ventricle and she will be on blood thinners for the rest of her life, along with several other meds.

Taylor Piucci

Taylor started her little life out with her own challenges of being born with a cleft palate she had reconstructed on her first birthday. By her second birthday she had some delays and was diagnosed with autism she hadn't spoken until after age 2.

Fast forward to last year Taylor had a bump or two on her neck the Dr. was watching but didn't have any indicator it was anything more than swelling when sick. Then one day in the morning didn't show but by 3 pm she had like three softballs on her neck. We called her doctor who was out of the office for the week, so we went to ER to just have peace of mind and maybe start the blood work. We found out she had Type one diabetes doing blood work. So, a week before her 11th birthday she was diagnosed with diabetes and after going to Albany med and doing a biopsy as well as Hodgkin's Lymphoma.

From there we decided to go to MSK for her treatment and chemo seemed to be working well up until last scan where it showed the lymphoma in her neck among other places was back in the last 2 weeks of treatment it had become resistant to the combo of medications which seemed to be working so well until then.

We have started a new combination of chemotherapy and will follow up with bone marrow transplant. We are all very optimistic this time will work doing more pet scans more often to change plan if needed. We have been so blessed with community prayers and support this last year. We had thought we would be done by now and only needing to do scans next year. We live in Stamford NY bought our house here about 7 yrs. ago. Taylor attends Charlotte Valley special needs classroom and loves it there. We have had so many first experiences from riding public transportation bus to going to the NYC zoo she enjoys so much.

I could go on and on about Taylor, she's such a happy person who takes everything one day at a time. Loves music singing and dancing keeps her positive attitude going.

Rowan DeCocker

Rowan is a 4 year old little boy who was diagnosed and is in active treatment for a neuroblastoma foxr2 brain tumor.

 Windsor Tietjen

Madison Monton

My name is Madison Monton. I am 19 from Richmondville and this is my story.

When I was 4 months old, I suffered a massive stroke in the deep part of my brain that resulted in significant, permanent damage that left me having Cerebral Palsy. This affected every part of my life including sitting up, crawling, walking, talking, and doing things independently. I started the early invention program at 8 months old. I received physical, occupational and speech therapy to help me learn, grow, and meet my milestones. Around the age of 3 we added special education services, hippo therapy and aqua therapy. I then transitioned from early intervention to the preschool program through my local school district to continue all my services.

Once I turned 5 my services continued through my local school district and I am still there now receiving all of my therapies and support I need.

Throughout the years I have had 3 major surgeries. Two for my legs to help me walk better and so I did not have to wear Afo's (braces). The other surgery was to remove my tonsils and adenoids that were extremely enlarged which affected my breathing.

I love my family very much and they have supported me with all my medical appointments and therapies so I can have the best life possible. They are huge advocates for me so I get what I need.

I love going to school, my friends, listening to music and going for long car rides.

Max Pascarella

Max David Pascarella was diagnosed with Spina Bifida after a sonogram at 18 weeks’ gestation revealed severe anomalies in his brain and spine. Max was accepted into a clinical trial at Children’s Hospital of Philadelphia and randomly selected to undergo pre-natal surgery on his back. At 25 weeks (and weighing approximately 1 pound) Max had surgery in-utero to repair the opening in his spine and protect his exposed spinal cord during pregnancy and birth. Max was born at 35 weeks in Philadelphia on August 11, 2008, and came home to Fleischmanns after 3 weeks in intensive care. Max has had several more surgeries to de-tether his spinal cord since being born, and most recently had spinal fusion surgery at Shriners Hospital in Philadelphia to stabilize his scoliosis.

Max is currently a sophomore at Margaretville Highschool where he was elected his class’s Vice-President. He is an active boy scout, sings in the chorus, and plays on the modified baseball team.

Max loves baseball, politics, and people, and hopes to either play for or be the general manager of the New York Mets some day!

Scarlett Vandermark

Scarlett was born October 24th, 2021. At 5 months old I noticed a huge change in her sleeping pattern along with a lot of nausea. I had taken Scarlett to her pediatrician multiple times and each time they had told me that she was just sick, and we had to let her body work through it… it got to the point where I took Scarlett in and told them there is something seriously wrong. I know my baby, and this is not right which led to them doing a full assessment and discovering her spleen was enlarged. She was then transferred to Mid-Hudson ER where we were told she may have leukemia and from there we were transferred to Maria Fareri Childrens hospital. Scarlett was diagnosed with ALL (Acute Lymphoblastic Leukemia) at just shy of 6 months old on April 21st, 2022. She received multiple rounds of chemo and immunotherapy, and long hospital stays. She ultimately had hit remission!! At this point we found out her specific kind was high risk, so we decided it was in her best interest to receive a bone marrow transplant. In October 2022 she had started the process of receiving a new immune system from an unrelated perfect matched donor. She had to undergo very harsh chemotherapy and a round of radiation. She handled the whole process amazingly with all your expected side effects from such harsh medications and she ended up being discharged just before Christmas 2022. She had multiple in and out short hospital stays up until the end of February when she was admitted and her oncologist had discovered GVhD (graft versus host disease) and TA TMA (transplant associated Thrombotic microangiopathy) Both serious complications from her transplant. Scarlett was admitted to the hospital from February 2023 to the end of August. That stay had included multiple ICU visits. She has improved significantly and is thriving, but Scarlett is still monitored very closely. Due to her still receiving “clinical trial” medications that she needs to get in clinic and our home is 3 hours from the hospital Scarlett and I (her mother) live full time in the local Ronald McDonald house. Right next to the Westchester medical center. I had to resign from my job and have been out for going on 2 years now since her original diagnosis. That is the medical side of Scarlett.

A little information about Scarlett is she is the most outgoing little girl you would ever meet. 2 years out she literally puts a smile on everyone’s face that comes into contact with her, and she has stolen so many hearts. Being she has been inpatient for most in the year and a half from her diagnosis her and I have become very close with the pediatric oncology staff at Maria Fareri children’s hospital in Westchester medical. She has such an amazing spirit and so much energy and I love that she’s finally able to be a toddler outside of the hospital. She loves arts and crafts, she loved music therapy when she was inpatient and she loves animals, especially her dog Duke who has waited patiently at home for us with grandma and grandpa! Scarlett is also an ambassador of the Maria Fareri Children's hospital and we got to speak of her story on the radio to help raise money for the hospital this past November. Her maternal grandparents were the biggest support for Scarlett and I. Being a first-time mom all of this has been beyond traumatic but thankfully I had the best support system and Scarlett coming out healthy and better than ever had made it all worth it.

Jax Baldwin

Jackson aka Jax is a 12-year-old boy from Gloversville NY. He was born with an extremely rare skin disorder called Epidermolysis Bullosa or EB for short. Basically, his skin does not produce a specific protein which acts like the glue that holds his skin onto his body and as a result, his skin will blister and slough off from the slightest touch. Jax has a more severe form of EB to which not just his skin is involved, but he is also affected internally as well as his mucous lining, inside of his mouth, teeth, eyes, bones and internal organs. There is no cure for EB, treatment consists of 24/7 wound care. Jax wears several layers of bandages from his neck to his toes that are designed for burn patients that help to protect his fragile skin, heal the current wounds and prevent deadly infections. EB causes a long list of secondary health complications, including fusing of skin from repeated blistering and scaring. The majority of Jaxs toes are fused/webbed together. Jax has a feeding tube which he receives all of his nutrition and medications through as it is just too painful for him to eat by mouth and he needs so much more nutrition than the typical 12-year-old so that his body can constantly heal and repair his wounds. At 9 months old, Jax underwent a bone marrow transplant to improve the severity of his condition, his body went from being roughly 80% open wounds to about 40%. Jax travels to Albany Medical Center once a month for an iron infusion and additional treatment. He also must travel to The Children's Hospital of Philadelphia every 6 months where he sees a diverse team of specialists who care for him. He undergoes tests, procedures and surgeries each year to keep him healthy. Jax uses respiratory equipment in the home to keep his lungs healthy and a wheelchair when his feet are too sore to walk and for long distances. We are working on getting a wheelchair ramp for the home, along with a stair lift for inside of the home and ultimately an accessible bathtub. Jax just had surgery in December and is waiting to undergo another major repair on his stomach. Jax was also diagnosed with autism at 2 years old, he is non-verbal, but he loves to blow raspberries and loves to giggle! He is nicknamed "The Mayor" at school as he waves hello to everyone and loves to give 'high-fives.' He loves to go for very long car rides, walks in his wheelchair and loves going to school! His favorite movie is Curious George and he loves to play on his iPad while spinning a sensory 'noodle' in his left hand. He is an incredibly smart, loveable little fella that is full of spunk and has a huge personality. His resilience is out of this world and truly inspiring.

EB is a life threatening and life limiting condition, but as his mother, I hold hope in my heart that one day there will be a CURE for EB, not just for my son but for all of the kiddos who suffer from this condition. To learn more about EB please visit www.debra.org

Harlee Brooker

Harlee-An was diagnosed with stage 3b Hodgkins Lymphoma in the beginning of August 2023 after going to the Emergency Department for swollen Lymph Nodes on her collarbone and neck on July 27th, 2023. Harlee is 12 years old and will be celebrating her 13th birthday in April! She's in 7th grade, but is staying home and her and her brother are working with an amazing tutor!

After being seen in our local ED, we were told to go right to Albany Med due to the size of the mass in her chest. The mass took up her entire chest cavity, pushing on her lungs, heart and against her airway. She could not be put under anesthesia for her biopsies and tests because of this and had to endure them with very little pain medicine. She also could not eat anything for 5 long days pending scans and more tests after being admitted into the PICU. She stayed there for 2 weeks before being admitted to the children's hospital wing. She was eventually discharged but came back to Albany Med 24 hours later with a fever and low blood counts. After spending 48 hours back in the hospital, she was discharged but we couldn't go home just yet. They wanted her close by until the following Monday for her doctor's appointment for a recheck of her blood work. This is where we stayed and built a relationship with the people at the Ronald McDonald House!

After being discharged for the last time, Harlee began going to the Bernard & Millie Duker Children's Hospital at Albany Med and was seen in the Melodies Clinic where she received 5 series of chemo treatments which went from August until finishing the day before Halloween! (Harlee's favorite Holiday)! She also received a couple blood and platelet transfusions in between. Harlee was able to get a short 2 week break before starting radiation in December, finishing the week of Christmas (on the 27th). Now she's enjoying the longest break she's had in 6 months and doesn't go back until mid February where they will do "end of treatment" scans!  On September 11th, 2023 her scan results revealed no active cancer cells! Repeat scans in November also showed no active cancer cells but not a lot of change in the size of her mass. According to her radiologist, he noticed a difference in size and told us the day after Christmas! We're beyond happy to know the radiation is working and will continue to shrink her mass while she relaxes in between appointments! Of course with any kind of treatment like this, there will be side effects and follow-ups that Harlee will have to continue to do for the rest of her life. Her body was put through a lot and she lost 35+ pounds along with muscle mass. She's slowly getting her weight back up and gaining muscle mass every day! She has had a positive, upbeat attitude during this entire ordeal!

Harlee can't wait to be able to do the things she loves! She misses her friends at school and can't wait to go back! She loves being outdoors and can't wait to be able to shoot her bow, go back to shooting on the Junior Rifle team, ride her 4-wheeler, go hunting with her father and grandfather, go fishing, be able to visit family and friends, go camping and go for rides in "her" '78 Ford F150 pickup truck!

Paige Schaffer

Paige was born on August 11th, 2011, healthy and thriving without any known medical diagnosis or concerns at that time; all of that quickly changed on December 26th, 2012, at 4 months old.  We had slowly noticed some concerns with Paige's development, and she had developed "spasm like episodes" that became increasingly concerning the day after her first Christmas, leading us to bring her to the ER for evaluation where she was initially admitted for observation. While at Albany Medical Center she was quickly diagnosed with a rare Epilepsy diagnosis, by way of EEG monitoring, called Infantile Spasms, or West Syndrome.  We treated her at home with daily steroid injections for a couple of months, the spasms resolved, and for the first couple of years of life, with therapy and early intervention services, she continued to develop, though she was delayed.

At two and half, Paige developed drop seizures, and based on her EEG pattern and overall assessment and development, she was rather quickly diagnosed with Lennox Gastaut Syndrome, a rare form of Epilepsy that is characterized by developmental delay and multiple seizure types that are difficult to treat.  Over the years that followed, Paige developed additional seizure types and progressive signs of developmental and intellectual disability, consistent with her diagnosis.

We later learned through additional testing and imaging that the underlying cause of Paige's Lennox Gastaut Syndrome, was a rare genetic mutation (LIS1 gene mutation/lissencephaly), and that there were structural abnormalities with the way her brain developed, that made it additionally difficult to control her seizures.  At various stages of her life her seizure frequency and pattern has evolved, and she has experienced many different seizure types, and at one point would literally have several hundred drop seizures a day.  Her physical condition has slowly declined over the years. She has gone from being ambulatory, to being able to crawl and sit unassisted, to being fully dependent on a wheelchair for mobility.  She's also lost the ability to eat and is dependent on a feeding tube for nutrition and medication administration, and no longer uses the few words and signs that she had worked so hard to learn in her early years of life.

A few years ago, she developed a rare movement disorder, called Sydenham Chorea, as a result of a bad strep infection, and though the involuntary movements are now controlled, her personality was severely impacted, which is another component of the diagnosis, and that unfortunately has never recovered.  She no longer smiles much or expresses joy as frequently as she used to, which we miss dearly.

We have done our very best to educate ourselves on treatment options and advocate for her every need. Despite numerous tried and failed medication combinations, with multiple seizure medications in place at any given time, VNS placement (vagus nerve stimulator), CBD trial, ketogenic diet therapy (twice), and brain surgery (corpus callosotomy), Paige continues to suffer from daily seizures, on average of about 5 to 15 a day, many which are intense tonic/tonic clonic, also known as Grand Mal seizures.

Despite a lifetime of medical trauma, repeated hospitalizations and slow decline, Paige's story is truly one of strength and perseverance. She is without a doubt the strongest, most resilient person we have ever met, and the greatest gift we will ever receive.  We are honored to be her parents, and she has taught us more about life than we could ever teach her.  She has made us better people, and her life is so full of love and meaning.

Today, we are simply just a normal, everyday family.  Our "normal" may not be the same as everyone else’s, but it's ours, and we are grateful for that.  We camp in the summers, take vacations when we can, and enjoy spending time with family and friends when able. Chris and I both work full time, Dad in construction, and Mom is a RN that works as an Investigator for the NYS Justice Center For The Protection of People With Special Needs, in the Mortality Review Unit.  Paige attends school at Maywood Academy, where she is loved by so many, and she has 2 amazing nurses that share the responsibility of providing her with one to one care on the bus and throughout her school day.

Abbigail Markel

Abbigail is a sweet, 16-year-old girl who was born suddenly at 32 weeks and spent 31 days in the NICU. She experienced severe health issues for many years with frequent illnesses that landed her in the hospital on an almost monthly basis for the first 5 years of her life. She had failure to thrive as a result of her feeding issues and illnesses, and was tiny, growing very slowly, not gaining or even maintaining weight. She had a variety of significant delays (learning, speech and language, eating/feeding, severe gastrointestinal issues, motor issues, and was not meeting developmental milestones. We saw many different specialists trying to figure out why all of these things were happening. We went to Boston many times for gastrointestinal issues. After many appointments and tests, we learned how severe her gastrointestinal issues were. She cannot digest, her stomach empties at an extremely slow pace, her stomach was attempting to push its contents out, while her small intestine was trying to simultaneously push them back in. The nerves throughout her entire GI system are not functioning correctly and there’s nothing that can be done to fix any of it.  She cannot eat anything thicker than a baby food consistency because she can’t digest it and suffers from chronic consolidation. She takes 3 medications twice a day for these issues (she also takes seizure meds twice daily). Her main source of nutrition comes from Pediasure.

In an attempt to find the cause of all of her issues, she had a variety of genetic tests done, with no answers. They wanted her to have one particular test done, but our insurance wouldn’t cover it, because it was about $20,000 at the time. Her neurologist referred us to join a genetic study in 2016. Participation in this study would allow her to finally have the $20,000 genetic test done at no cost to us. They weren’t sure if we would finally get an answer or not, but we gave it a go. She was accepted into the study and had the test done and about 6 months later we got a call and she was diagnosed with a rare genetic syndrome (Wiedemann Steiner Syndrome). This syndrome is the cause of her significant cognitive delays, issues with speech and language, epilepsy, motor issues, feeding issues, severe gastrointestinal issues, dental issues and more. Despite a lifetime of struggles, Abbigail is an amazing young lady with a heart of gold, positive attitude, and the absolute best sense of humor. She always has a smile on her face, and nothing but love and joy in her heart.

Olive Maland

Olive is a 14-year-old girl who was diagnosed with Stage 4 Burkitt Lymphoma/Leukemia which is a rare but highly aggressive and fast-growing B-cell non-Hodgkin lymphoma (NHL). She has been hospitalized since her diagnosis on 12/27/23.

Olive is a great kid, the kind of daughter every parent hopes to have. She’s smart, funny, caring and beautiful inside and out. She is an all-around good kid who always tries her hardest at everything she does. She’s a member of the Jr. National Honor society, on the high honor roll at her school, she is in English Honors class and taking Geometry in 9th grade. Olive is a member of the Student Government, plays the clarinet in her HS band, she’s learning bass guitar at home, she was a cast member in her HS musical and would have been again this year, she’s a talented artist, and a lover of all animals. Olive has a bright future ahead of her and aspires to major in Biology and work with animals.

Anyone who knows Olive knows, without a doubt, she will accomplish every single hope and dream! She just needs to beat this disease first!!