Recipient Stories

Lindlee Bowker

Samantha Coyle

Samantha,17, the oldest daughter of 4, was recently diagnosed with Craniopharyngioma, a very rare brain tumor. Samantha has always worked hard to achieve her goals. She recently graduated high school early to start college at SUNY Oneonta, majoring in pre med and bio chemistry. Samantha has 3 sisters, Savannah 15, Sierra 14, Sydney 11. Her diagnosis came as a complete shock to all. while being treated in the ED for a 4 wheeler accident doctors did a full body scan and found the tumor. After many visits with Bassett and Rochester hospital, we decided to have Samantha’s treatment done in Rochester. Samantha began her treatments December 23, 2024 and will be traveling back and forth from New Berlin to Rochester until Feb 5th. Staying weekly away from her family at a Ronald McDonald house in Rochester. Samantha will be receiving daily radiation treatments. Along with Samantha's daily radiation she will be having weekly checkups and weekly MRI scans to check on the tumor to see if the radiation is shrinking it and praying to not have surgery. She is in a lot of pain daily and we are continuing to work with her team of doctors to figure out what they can do for her to relieve some of the pain. The radiation is taking a toll on her making her very tired and sleeping a lot.

Sadie Dutcher

Our Sadie Lady is just shy of 12 years old. She was our full term Valentines baby who had the unfortunate luck of having a birth injury. This resulted in HIE (hypoxia ischemic encephalopathy - lack of oxygen at birth). She was transferred to another hospital after seizure activity was discovered. Here she was placed on a cooling cap for 72 hours to reduce brain damage. Sadie ended up with a “wait and see” diagnosis, but that she would most likely have a level of Cerebral Palsy. She slowly got her suck, swallow and gag reflex back, albeit weak, but due to the trauma of suctions and life saving measures she was unable to eat orally and developed severe oral aversion and dysphasia. She ended up with a permanent feeding tube so she could receive her medications and food. We still held strong to breast feeding…even if it was now by pumping and giving to her by a feeding pump. Sadie continues to have seizures that requires 911 regardless of emergency meds. Every common cold would put her in the PICU for a minimum of a week and usually intubated. This is due to having Laryngomalacia as well as Tracheobronchomalacia. These are fancy ways of saying that her airway collapses when she breathes and also causes obstructive sleep apnea (she has to have an oximeter on her every night to monitor oxygen and heart rate). This causes her loud breathing and the sucking in of throat and chest. Sadie had to get frequent chest PT, breathing treatment and CPAP to help keep her lungs open and clear. Sadie used to be on oxygen nightly and need constant suctioning .
As she got older we went to Boston Children’s hospital due to her frequent infections and failure to thrive. They treated her holistically and even planned out steps and surgeries to improve her health and decrease the amount of supports needed at home. She had supraglottoplasty and tonsil and adenoid removal. This was a week stay due to her already complex medical status. This surgery helped prepare her lungs and breathing so she could be under longer anesthesia for her bilateral hip osteotomy. Sadie will forever need surgeries such as Botox and phenol injections, as well as tendon lengthening to help her with her tone, contractures and comfort. She wears AFOs on her feet as well as hand splits. She also has a TLSO due to worsening scoliosis. We are trying to slow down the progression to prolong having to get spinal fusion. The good news is that Sadie has gotten bigger and stronger and no longer uses a CPAP, oxygen or suctioning. We blend up real food to give her all the calories and nutrients she needs and by doing so she had finally started growing, gaining weight and staying healthy.
Ther is so much more to Sadie than her Cerebral Palsy diagnosis. She does not sit or walk unassisted….but loves the water. She is nonverbal, but has so much to say in her own way. She needs 100% care but wants to do what the other kids are doing (and we try and make it happen). She loves amusement park rides, camping, going on bike rides, skating, hikes, swimming, sledding, adaptive sports, seeing plays, watching her brothers, and everything in between. If it doesn’t sound doable then you haven’t seen the ways we make it happen! She has the best laugh and smile, if you are gifted to either. Her hair and eyelashes are a topic of envy. She is the boss, our princess and our reason of doing. She gives us our strength on days we want to give up. Sadie goes through struggles that no kid should ever have to endure but we believe she makes the world better because she is in it.

 Mathew Elthorp

Matthew Elthorp was born on January 23, 2024, at Bassett Medical Center. From the very beginning of his life, he has been enveloped in the love and support of his family, which includes his devoted parents, Stephanie and Demetrius Elthorp, and his two brothers: Ronan, aged 8, and Wesley, aged 2.
At the tender age of six months, Matthew's family observed that he was experiencing abdominal issues, which led to a series of medical consultations. By the time he reached 10 months old, the diagnosis of Neuroblastoma—a rare form of cancer that arises in nerve tissue-was confirmed. This challenging news has significantly impacted the Elthorp family as they navigate the complexities of treatment and care.
Currently, Matthew is receiving specialized treatment at Upstate Golisano Children's Hospital in Syracuse, NY. The dedicated medical team is committed to providing him with comprehensive care, aiming to ensure the best possible outcomes for this brave little boy. Despite the challenges posed by his condition, Matthew exudes a spirit of resilience and joy. His sweet demeanor and infectious smile illuminate the lives of those who are fortunate enough to be in his presence.
In addition to his strength, Matthew has a delight for life that includes a particular fondness for French fries, Popsicles, Gerber snacks, and exploring new foods. These simple joys serve as a reminder of the importance of happiness and laughter, especially during difficult times.
The Elthorp family's journey is not merely one of illness but also one of hope, love, and the unyielding bond that exists among them. As they continue to face the hurdles of treatment and recovery, Matthew's courage shines through, inspiring everyone around him to cherish each moment and to foster a spirit of determination in their own lives.

Emily Bennett

Emily was diagnosed with Spina Bifida back in August 2024. She underwent a surgical procedure before even being born. Emily has has a condition known as 22q11.2 deletion syndrome. Emily is doing fine for now, but will go for a second opinion to Boston for bladder.

Rostlyn Parslow

Rostlyn has always been a truly special child. From birth, she was dealt a tough hand, but she never let that stop her. Rost was born 9 weeks premature at only 2lbs Soz. The coming weeks before her birth, the doctors advised me to plan for her death, but she persevered, she was perfect. At 8 years old, she was diagnosed with scoliosis. The doctors were stumped on how this child went from no curve, to a severe curve in just a few short months. Idiopathic Juvenile Scoliosis was her diagnosis until April of 2024. Rostlyn has always been a bit clumsy but around 12 years old, her balance really started to get bad. Her Orthopedic doctor and I explored every avenue for a year, but he couldn't find anything wrong with her. Rostlyn's stability continued to decline yet all of her tests were coming back unremarkable. As a last resort, her doctor performed a simple neuro test and referred us to neurology. There, Rost underwent another series of test, all coming back normal. After exhausting all options, the neurologist recommended genetic testing, and that's when we finally got answers. Rostlyn has Friedreich's Ataxia (FA). FA is a rare genetic progressive condition caused by a mutation in the FXN gene that affects 1 in 50,000 people. There are only an estimated 15,000 confirmed cases worldwide. What does this mean? The mutation causes Rostlyn to have low Frataxin. Frataxin is a protein needed for mitochondrial function. To put it simply, low Frataxin leads to nerve cell damage in the spinal cord resulting in scoliosis, loss of coordination and balance, muscle weakness, diabetes, sensory loss in the hands and feet and cardiomyopathy, the leading cause of death in individuals with FA. Other symptoms include slowed speech, trouble swallowing and impaired vision. Getting this diagnosis has been a shock and honestly devastating. After doing research on this condition, we found out that this condition shortens Rostlyn's expected lifespan substantially. The average life expectancy of someone with FA is between 40 and 50 years old and that's only if the individual doesn't develop life threatening cardiomyopathy earlier. Currently there is no cure and no FDA approved pediatric treatment. What this means for us now is we have to prepare for all the supports Rostlyn will need. This includes but not limited to a mobility scooter, wheel chair, lifts, shower supports and renovating our home to be handicap assessable.

Alexander William Hodge Jr.

AJ was diagnosed at 4 months old with a brain disease that is caused by a genetic disorder that we also learned about at 4 months old. He has fought so many obstacles in his year and a half of life. He is blind.
He has epilepsy. He cannot sit, walk, talk or eat anything by mouth. He needs 24/7 care and also constant suctioning because he cannot swollow. He does love cuddles and holding hands. He is our special boy and a gift from God. Doctors say his life will be short and that of the 45 cases in the entire world only a few lived until 4 years old, but I know in my heart that AJ will beat those odds. He has fought RSV and pneumonia. He also came back from being intubated for over a week.
His strength is what keeps us all going. He gets physical therapy 2 times a week and we love seeing what he shows us the he can do even if they are small things. Our prayers are for him to live a long beautiful life and we will do anything to make sure that he does. There is no cure for his disease because of how rare it is, most doctors have never even heard of it until we learned about AJ. The only treatment is managing his seizures with medication. His condition is called ITPA deficiency, even Google doesn't know much about it. He's our miracle!

Cordilia Mae Morgan

Cordelia Mae Morgan was born on April 1, 2022 to Thea Sucato Morgan and Walter Morgan. At 11 weeks gestation, Cordelia was diagnosed with gastroschisis with her small intestines on the outside of her body.
On the day of her birth, after multiple failed inductions, an emergency C-section was performed and the 2 surgeons found her to have 5 major organs on the outside of her lifeless body. She had to be resuscitated for 6 mins and was admitted to Albany Med Neonatal Intensive Care Unit. The medical staff were amazed at her survival. Cordelia spent 2 months in NICU, had 5 surgeries for complete closure of her abdomen and had cellulitis twice before she was finally discharged.
To this day, Cordelia has made so much progress with delayed milestones but unfortunately, she still has complications from her birth defect. She has a severe lung condition, extremely low iron and she gets sick easily. She needs more surgeries to move her organs to the correct placement. Currently, her parents take shifts giving her lung treatments and taking care of her doctor’s appointments and other medical, special nutritional and therapy needs. Recently, she has begun to say a few words.
Last winter Cordelia got sick frequently and her parents had to take time off from work to take her to the hospital and tend to her round the clock. It has been a struggle for the parents to make ends meet and take care of the whole family. Her brother and two sisters help to take care of her.
Cordelia is a happy little girl and the youngest of 4 children. She brings happiness and joy not only to her family but to all her medical professionals and therapists. She loves to prank everyone around for a good laugh despite her health challenges, the constant doctor’s appointments, the early intervention and the early head start team sessions. Her smile melts the heart of everyone she meets, and her strength has inspired others to keep pushing through hard times. Her siblings all love her so much and have created such a wonderful safe invisible shield from the not-so-niceness of life.

Adlee Kellerhouse

Adlee Kellerhouse was born on January 8th 2025.  She has Trisomy 21, as well as duodenal atresia and an atrioventricular septal defect.  She underwent corrective surgery on her stomach and intestines when she was 3 days old, and is currently in the NICU for an extended stay and recovery.  She will also require open heart surgery around 4-6 months of age and another hospital stay for recovery.

Claire Smith

Claire was born on July 16, 2019. Claire was born with Trisonmy 21 and a heart defect with pulmonary hypertension. At 18 months old, she contracted RSV and was hospitalized. On the night of hospitalization, her pulmonary hypertension, took a turn for the worse with the RSV and she had to be intubated. As she was being intubated, she stopped breathing for five minutes. They were able to revive her, but she remained intubated for over a month with a two-month long hospital stay. While there they discovered she had incurred brain damage from the lack of oxygen. At 18 months, they told us we had a newborn baby once again to bring home and she was starting over. They couldn’t tell us what or how long it would take for her to be able to do things. She is a true miracle and gift from God and continues to conquer life‘s challenges. They originally told us they didn’t think they would be able to fix her heart defect because her pulmonary hypertension was so bad but four years later (this past December) she was able to get her heart healed and come home in record time, five days post-surgery. She is still learning how to sit up and struggles with physical limitations but is a light and joy to everyone she meets once she gets to know you!