When Lilah was only five years old, she started stumbling and having trouble with fine motor skills. Her pediatrician dismissed it as clumsiness, but her mom persisted, seeking further testing in August 2024. Despite an initial hip X-ray showing nothing, Lilah’s symptoms worsened over the next year—she couldn’t walk in a straight line, was falling and tripping, and her handwriting deteriorated. I (Nana) witnessed her fall dangerously close to a concrete block and knew this was more than clumsiness. We pushed for answers, seeing specialist after specialist: GI, Allergy, Nephrology, Optometry, Orthopedics. Each visit brought new information, but no clear diagnosis. Finally, after months of waiting, a neurologist recognized the signs and ordered genetic testing. Four weeks later, we received the call: Lilah had Friedreich’s Ataxia, a rare and progressive neuromuscular disorder.
At the same time as her diagnosis, Lilah’s family was notified that their rental home of 8 years was sold and they had just 30 days to move. Lilah lives with her mom, Mya, her dad, Chase, and her two siblings, Lilly and JJ. On top of the emotional and physical challenges of her diagnosis, her family now faces the urgent need for a new, accessible home. Lilah will also need reliable, handicap-friendly transportation to get to St. Jude’s and Children’s Hospital of Philadelphia for ongoing care. In time, she will require leg braces, a rolling walker, and eventually wheelchairs to maintain her mobility and independence.
We are reaching out to our friends, family, and community for help during this incredibly difficult time. Lilah’s journey has just begun, and now, with her diagnosis and the sudden loss of her home, her family is facing more obstacles than ever. Your support—whether through a donation or by sharing this fundraiser—will make a real difference in Lilah’s life. Every bit of help brings us closer to providing her with a safe home, the medical care she needs, and the hope for a brighter future. Thank you for standing with us and showing Lilah that she is not alone.
At the same time as her diagnosis, Lilah’s family was notified that their rental home of 8 years was sold and they had just 30 days to move. Lilah lives with her mom, Mya, her dad, Chase, and her two siblings, Lilly and JJ. On top of the emotional and physical challenges of her diagnosis, her family now faces the urgent need for a new, accessible home. Lilah will also need reliable, handicap-friendly transportation to get to St. Jude’s and Children’s Hospital of Philadelphia for ongoing care. In time, she will require leg braces, a rolling walker, and eventually wheelchairs to maintain her mobility and independence.
We are reaching out to our friends, family, and community for help during this incredibly difficult time. Lilah’s journey has just begun, and now, with her diagnosis and the sudden loss of her home, her family is facing more obstacles than ever. Your support—whether through a donation or by sharing this fundraiser—will make a real difference in Lilah’s life. Every bit of help brings us closer to providing her with a safe home, the medical care she needs, and the hope for a brighter future. Thank you for standing with us and showing Lilah that she is not alone.