Please Help Fund Ryan's Lifesaving Treatment

Ryan suffers from Duchenne Muscular Dystrophy, which is a muscle wasting disease. It is a progressively debilitating condition, that eventually affects his heart and lung muscles. He has been receiving an IV infusion to slow the progression of his condition since July 2017. He is 11 years old and recently lost his ability to walk. Tenncare has denied him access to his treatment based on his loss of ambulation, which is completely unjust.

We lost an emergency appeal hearing because the state argued that he could not benefit from this treatment because he can’t walk. The treatment is the first ever medication that actually slows the progression of this monstrous condition, and we are devastated that he has been removed from access. He has been without his treatment for 5 weeks as of 6/11/24.

It is very expensive, so we are used to fighting with insurers, but we have never been treated this way. Ryan’s medicine is around $20,000 per week, so we are overwhelmed by this expense. There are many people fighting to get him access to his treatment, but everyday we lose muscle tissue that we can never get back.

Any amount donated will go towards his medication, or any other treatments that become available.

Thank you for any assistance,

The Schoonover Family

UPDATE: We are happy to report that Ryan will temporarily begin receiving his IV infusion, Viltepso! Access has been restored through the amazing work of Ryan’s advocates while we continue to plead our case with his insurers. Our urgent need has been met, for the moment. We wanted to share the good news with everyone, as we have been blown away by the support we have received. We will save every penny of this money for future medical costs, including a trip to Boston to see a specialist that is out of network.  Thank you all for your continued support and prayers. We have a long ways to go to get insurance back on board, but our resolve has been strengthened by your compassion. God Bless!