Will is a neurodiverse 9-year-old with significant health challenges. He is in the 4th grade but has been unable to attend school this year due to these challenges. Will is one of 4 tight-knit siblings (5 if you include the dog). He is a Star Wars fan who loves building Legos, playing Minecraft, learning about animals, and spending time with his dog Penny. He also is a complex patient, wears a brace to help stabilize his left leg, and has traveled for medical care to the Children’s Hospital of Philadelphia (CHOP) for most of his life.
In October 2024, after surgery to remove tumors and a muscle lengthening procedure, Will was diagnosed with an intermediate-risk cancer called desmoid tumors. These tumors are rare, have a high rate of recurrence, greatly impact quality of life, and in Will’s case cause significant pain and lack of stability. With the presence of these tumors, CHOP doctors were able to reach an elusive diagnosis for Will’s underlying condition, neuromuscular choristoma, which causes him significant sciatic nerve pain, limits mobility, and precedes the growth of desmoid tumors. Will is currently undergoing chemotherapy to try to control the tumors. Two chemo treatments have failed and he has been approved for an experimental drug. Both choristoma and desmoid tumors are lifelong diseases that currently have no cure.
Your financial contribution for Will and his family will help to pay for current and future medical expenses including new bracing and a wheelchair, related travel expenses to CHOP, mental health and physical therapies, tutoring, and sibling childcare while parents are at the hospital/doctor or caring for Will.
Will’s family deeply appreciates and thanks you for your support.
