Olivia Young
Olivia was diagnosed with ANCA vasculitis in July 2025 after experiencing acute kidney failure and pneumonia. ANCA vasculitis is an autoimmune condition in which the body’s immune system mistakenly attacks its own blood vessels, causing inflammation and damage to major organs. In Olivia’s case, the disease has severely affected both her kidneys and lungs, causing serious complications that required a one-month stay in the Pediatric Intensive Care Unit at Albany Medical Center and a life flight to Boston Children’s Hospital.
Olivia’s ANCA vasculitis is still not in total remission, but she is almost there as this treatment takes time. She continues to go through ongoing therapy treatments to help calm her immune system. Although her lungs have miraculously recovered, her kidneys have not. As of November 2025, Olivia was deemed to be at End Stage Renal Disease. She now requires dialysis at Albany Medical Center three times weekly, until she has reached remission to be fit for a kidney transplant. We hope for this to happen late Spring/Summer 2026.
Aurora Bagley
Aurora Rose Bagley was born in June of 2018. She had a seizure within 5 hours of being born and was sent to the NICU. They discovered 3 blood clots and bleeding on the brain. Diagnosis was Cerebral Venous Sinus Thrombosis (CVST.) She was put on blood thinner shots on a dose the clots would stop clotting, but the bleed wouldn't increase. Aurora had to have blood drawn weekly to monitor and adjust the blood thinner. By 12 months old, she was off the shots and anti-seizure meds. Neurologist warned that the scar tissue may cause her to have a seizure in the future and have difficulty with speech, reading and her language. At 3, Aurora received her first hearing aid, moderate to severe in left ear. At 4, she started Speech Therapy. Today, she has ADHD, Speech, Hearing loss and great difficulty with reading and spelling. She needs to see the Neurologist, and Hearing every six months, developmental every 3 months.
Jazlyn Kelly
Jazlyn Kelly is a strong, driven, and compassionate 16-year-old girl. She is a straight-A student, a dedicated athlete in cross country, track, and pole vault, a loyal friend, and a loving big sister. She has always shown determination, resilience, and heart in everything she does.
In November 2024, Jazlyn became sick with what we believed was mono. When the fatigue and severe neck pain didn’t improve and her vision was affected further imaging revealed devastating news. On March 1, 2025, Jazlyn was diagnosed with stage 4A EBV-related nasopharyngeal carcinoma, a rare and aggressive cancer hidden deep in her head.
Jazlyn completed nine intense weeks of chemotherapy and immunotherapy, followed by proton radiation. The toll has been significant. She has permanent hearing loss and now requires hearing aids. She was forced to stop immunotherapy early after it severely damaged her gut. She continues to live with long-term side effects, including jaw complications, and requires frequent travel for ongoing cancer surveillance and specialty care in Rochester, Albany, Cooperstown, and New York City.
Despite everything she has endured, Jazlyn continues to move forward with courage and grace. The support of our community helps carry her through the ongoing medical care, travel, and recovery that remain part of her life.
Gabriella Macken
Gabriella Macken is 4 years old. She was born with hydrocephalus, Agenesis of the corpus callosum, Spina bifida, level 5 cerebral palsy and legally blind. Gabriella also has seizures that often results in long stays at Golisano’s Children’s Hospital. Gabriella sees specialist at both Upstate University and UR in Rochester. Both hospitals don't expect she will have a long or full life span but her contagious laugh and smile tells us otherwise. She is our warrior!
Caitlyn Hilton
From the tender age of three years old Caitlyn has faced life with childhood interstitial lung disease (chILD), a rare and challenging condition that has significantly impacted her life. What began as a necessity for supplemental oxygen solely during sleep has, over time, progressed to the point where she now relies on it continuously, 24 hours a day, 7 days a week.
Caitlyn's health challenges extend beyond her lungs; she also navigates life with a compromised immune system and other significant medical complexities. This reality means a demanding schedule of care, including frequent hospital admissions and, at a minimum, two specialized follow-up appointments each month at Boston Children's Hospital as well as several more local appointments each month. Her world is intertwined with frequent medical visits and treatments.
Yet, despite the immense physical burdens and the constant demands of her medical regimen, Caitlyn's spirit shines with extraordinary resilience. She adamantly refuses to let her illness define her or limit her joy. Instead, she embraces life with a vibrant enthusiasm that truly moves everyone around her.
Caitlyn finds immense happiness in her family, friendships and actively participates in activities that many might consider incredibly challenging or even impossible for someone with her condition. Whether she's gracefully gliding on roller skates, experiencing the exhilarating freedom of swimming—particularly in the ocean—or passionately participating in cheerleading , Caitlyn lives life fully and without reservation. Her determination is a powerful testament to her unwavering courage and incredible zest for life. Caitlyn has to take many medications to hopefully prevent rapid progression of her disease , she currently is not a candidate for a lung transplant. Unfortunately, there is no cure for childhood interstitial lung disease.
Bowen Bray
Bowen Axl was born on January 1st 2019 10 fingers 10 toes, 9 lbs. 6 oz pure perfection. At four weeks old, his family noticed he was having difficulty swallowing and his movements had decreased. So, his mom scheduled an appointment with his pediatrician because of her concerns. During the short waiting period for that appointment his family noticed he also had labored breathing. When we arrived at his pediatrician's office, she looked at him and did a couple of tests, she turned to us and said I am very concerned I want you guys to head straight to the Children’s Hospital don’t make any unnecessary stops if you don’t have to. Upon our arrival at the Children’s Hospital, they wasted no time on getting him evaluated and on the proper medical equipment to get his stats back in the normal range. Once the rush had calmed down and we were in the room taking in everything that had just occurred a neurologist came into Bowens room and she did her own assessment and asked a bunch of questions… then she told us what she thought he might have but wouldn’t know for sure until this one particular test came back. She said she thought he had SMA (spinal muscular atrophy). As soon as she left the room, we looked up what SMA was… it is a rare genetic disease affecting 1 in 11,000 babies causing progressive muscle weakness and wasting due to the loss of nerve cells (motor neurons) in the spinal cord, affecting movement, breathing, and swallowing. We were shocked and devastated as there was no cure only treatments for those living with SMA. The neurologist took Bowen on as if he was her own. Two weeks later the neurologist called us with the news, Bowen did in fact have SMA type 1 and from that point on we were all in on his care and advocating for what he needs and deserves to live his best life! Due to the swallowing issues, Bowen had a G tube placed to make sure he gets the proper nutrition and because of his breathing was sent home on a bipap which helps tremendously to this day. With SMA being a muscle related disease, Bowen has had to have countless surgeries and doctor appointments all over the state ranging from Strong in Rochester, Morgan Stanley Children’s Hospital in Manhattan to Golisano Children’s Hospital in Syracuse!
Bowen doesn’t let his diagnosis define who he is or how he chooses to live his life… Bowen is kind, courageous and so caring. He loves going to school and learning new things. He loves reading books and playing outside!.
Laney Mondore
Laney is 15 years old and her story starts since birth. She has seen many doctors and specialists her whole life. We are thankful our miracle girl has always been a fighter.
When she was born, she had a VSD that was repaired with open heart surgery at 7 months old. She also was born with very little platelets received transfusions at just several hours old. As the years went on, we have always continued our relationship with Albany Medical Center for Hematology and Cardiology. Her battle has been continuously low platelets her whole life. About a year ago they were getting concerned her counts were failing. She had some more testing done to find out she was showing signs of needing a bone marrow transplant. She was diagnosed with bone marrow failure from a rare genetic mutation.
Today she is now recovering from her bone marrow transplant that was received on October 30, 2025, At the Golisano Children's Hospital in Rochester, NY. Where she was inpatient for 47 days to get her line placed and begin condition treatment to prepare for the cells. She was away from home for a total of 60 days. While she is recovering, we make weekly trips to Rochester to continue level checks and make sure everything is doing its job in her body. She has continued to have so much courage and determination through this process.
Ryan Dibble
Ryan was born with OEIS complex, Congenital extroversion of urinary bladder, anomaly of bladder, and developmental anomaly. In other words, he was born with some of his organs on the outside of his body, and basically everything below his waist was split in 2. Including his bladder and genitals. He also has a pelvic anomaly. He was rushed to Boston children’s hospital 2 days after he was born, and shortly after had his first surgery to put things back where they belong. He has a colostomy bag and will have one for many years, if not forever. He’s been living with his bladder outside his body for 5 months, and is due Feb 2026 to have his next 2 surgeries to hopefully fix his bladder and genitals, and then his pelvis as well. Which he will be in a cast for 2 months to recover from. He will have a long road of hospital trips and surgeries in the future.
Katherine Kerr
Katherine is a four-year-old girl filled with positivity, hope, resilience, and energy. At only five months old, Katie experienced the first of many seizures. Just two months later, she was diagnosed with Dravet Syndrome, a rare, severe, and lifelong form of epilepsy. Since that diagnosis, she has faced many hospitalizations as additional health needs developed. Once Katie’s neurological care was transferred to the Children’s Hospital of Philadelphia, her seizures became more manageable — but they will never fully go away.
Ace Barrows
After battling a blood disorder at birth, Ace quickly showed the world just how strong-willed and courageous he is. That same courage was called upon again when he was diagnosed with stage III rhabdomyosarcoma in March of 2025. Since then, Ace has endured multiple surgeries, weekly chemotherapy, and countless hospital stays. While treatment took a toll on his body, it never touched his spirit.
Liam Thursh
Meet Liam, a resilient 13-year-old who has faced more than his fair share of challenges but continues to shine brightly. Born at 37 weeks' gestation, Liam underwent his first surgery within hours of birth to close a hole in his spine caused by spina bifida. Just a week later, he had a second surgery to place a shunt to address hydrocephalus, the fluid buildup on his brain. Over the course of his 13 years, Liam has undergone 27 surgeries, each one a testament to his incredible strength and determination.
Though life has presented him with many obstacles, Liam remains unstoppable. He uses braces, a walker, and a power scooter to get around, but these devices are just a small part of who he is. A true enthusiast at heart, Liam has a deep love for trains, airplanes, and the Minnesota Vikings football team. He also enjoys playing fighting video games, where he immerses himself in action and strategy, always ready for the next challenge.
Liam’s story is one of perseverance, positivity, and a zest for life. With his infectious enthusiasm and unbreakable spirit, he continues to inspire those around him, proving that no matter the obstacles, passion and determination can take you anywhere.
Maverick Mackey
Maverick was born on August 17,2021 at Albany Medical Center weighing in at just 5 pounds and with a head size of just 25cm. Maverick's diagnoses include Microcephaly, epilepsy, cortical visual impairment, swallowing dysgraphia, failure to thrive, and severe global developmental delays. He spent the first 10 days of his life in the NICU where he underwent test after test and worked through some feeding difficulties. Fast forward a few months and we got the diagnosis that he had a rare genetic mutation on the PNKP gene. Doctors told us there was a good possibility he would never be able to do anything.
Maverick is a 4.5 year old boy who can put a smile on anybody’s face. His determination and perseverance are something I admire. Maverick is unable to walk on his own, but he can frog jump all over and is working so hard at pulling himself to stand. Maverick is non-verbal, but he tries to talk and communicates with us with babbles and lots of other sounds. Maverick eats by mouth, but doesn’t chew so everything has to be pureed and feed to him. He needs full adult support for every aspect of his life, but that doesn’t take away from how hard he tries each and every day. Countless hospital admissions and over 15 therapies a week, but he will always look at you and smile no matter how many seizures he just faced or how sick he is.
Maverick's life has been nothing short of hard, but he has shown everyone how some hard work can go a long way in a child’s success.