Bo faces the challenges of MECP2 Duplication Syndrome on a daily basis. He receives all his drinks through a port into his stomach due to severe aspiration. The syndrome has robbed him of his ability to speak. As with many neurological disorders, Bo's muscles are more lax at rest than a typical human. It takes him twice as much effort to contract his muscles, so when he walks and climbs stairs, it's as if he's carrying an extra person with him. This past winter, he was hospitalized at the Children's Hospital of Philadelphia four times and endured two surgeries. His tonsillectomy landed him in the PICU for a week. Bo was unable to continue at the daycare he loved due to repeat respiratory infections and surgery preparations.
In spite of his challenges, Bo lights up a room like the sun. He has worked so hard for his earned skills, and a severe regression looms. The thought of losing his personality and laughter is too painful to process. Bo is still young, and there is a great chance that an MECP2 treatment will reverse his syndrome and allow him to live a typical life. The Spangler family hosts an annual gala dedicated to developing a cure for Bo and all his MECP2 brothers and sisters.
Bo's mom, Kim, blogs about their journey of loving life with a scary diagnosis at 3940 Sherwood Lane.
Please help us cure MECP2 Duplication Syndrome and donate in honor of Bo.