Support Myla Grace's Fight for a Normal Life

My name is Anthony Passini. I’m the father of Myla Grace Passini, who was diagnosed with MPS III type A, better known as Sanfilippo syndrome type A. This is an incurable disease with promising hope in the future with gene therapy, enzyme therapy, and many other clinical trials going on. Myla has not been fully hit with the disease as she is still able to walk, talk, eat on her own, and is still potty trained at 5. This disease moves really fast, and the first to go is her speech. We have a bunch of promising appointments, but they are all over the country. Myla and her family are asking for help to make it to these appointments and if there are any other clinical trials that she may be put in for. We will be traveling all around the country taking time off of work to make these appointments so it will be help to make this all possible. Hotels, gas, flights food when out on these appointments it all will help. This is an amazing little girl who deserves to have a life just like every child does. They only gave Myla 5-15 years of life, and we want to beat those odds and keep her and other children with this nasty disease with their families as long as we can and with as much of a normal life as she can have.

Thank you, God Bless

Passini Family