Nicholas was unable to produce critical brain matter due to Canavan Disease. The only chance he had for survival was successful experimental gene therapy. Unfortunately, this therapy was still in the early stages of research and not available in South Florida when Nicholas was fighting his battle, requiring the family to travel elsewhere to get access to the gene therapy. This, of course, caused significant additional hardship (financial and time-related) to the family.
Short-term, The Mathew Forbes Romer Foundation jumped in to provide support to the family by helping with the travel expenses so Nicholas could participate in the trials. Long-term, the Foundation is investing heavily in Gene Therapy research nationally for children with fatal genetic diseases, as well as here in South Florida. Nicholas ultimately lost his battle at age 16, but to this day continues to inspire us to fight and work for the cure.