Support the LesPierre Family

Ryan is a 6 year-old with an amazing sense of humor, moves that could win any dance-off, and the most hardworking kid we know. He is truly a friend to all, with a personality full of kindness and positivity.

Since he was very young, Ryan has been fighting against his diagnosis of Alexander Disease– an extremely rare form of leukodystrophy. This disease progressively damages the white matter in his brain, leading to increasing difficulty with skills in a variety of areas.

While there is currently no cure for Alexander disease, Ryan has put in countless hours of work in school, therapies, and with his medical team at Children’s Hospital of Philadelphia (CHOP). He has spent hours each day working on keeping his strength, communication, and motor skills, all while brightening the lives of everyone he meets along the way.

Now a preschool graduate, Ryan’s reputation at school for his signature “salute” preceded him. He loves a playlist full of Koo Koo Kangaroo and Taylor Swift songs, being a chef, and reading Elephant and Piggy books. Most importantly, anyone who meets Ryan knows how fiercely he loves his family and friends (and his therapy horses Posey and Stetson!)

Since July, Ryan has required inpatient medical care at CHOP due to the progression of his disease. Recently, his family and medical team have made the decision that he will come home to be comfortable and spend time with all his favorite people.

Ryan has given everyone who meets him so much; now it is our turn to give back to him and his family. His parents have taken extended time off from their jobs to stay with Ryan in Philadelphia and care for him. When combined with medical bills, the expenses of traveling across multiple states, and equipment and support needs for Ryan’s return home, the financial burden is significant.

Please consider donating to alleviate some of this burden for Ryan’s family, so they can use their time and energy for the most important thing right now– being Ryan’s family.