Boston

French doctors did not take any decision in regards to the evolution of the disease so my family decided to search for a solution, beginning with the Internet. They didn’t take long to create an association, called AFAS, and my great mum established a valuable contact with the Boston Children’s Hospital where my medical record was immediately sent. On July 8th of 2005, my mother and I met Boston’s medical team and I must say this trip changed my life. First of all because I had the feeling -for the first time- that doctors really know about the disease and willingly accepted to share their knowledge and experience by talking about the research they were performing. Most of all, they agreed to cooperate by suggesting the implementation of a treatment they believed should have positive effects.

In the following months, my family and the whole association were fighting in France so that I could receive the treatment proposed by the Boston medical team. The French health department did not authorize such a treatment and we all looked for a solution abroad. In December, thanks to a very valuable contact established with Dr Juan Carlos Lopez Gutierrez in Madrid (who knows about the disease and is willing to collaborate), I finally start the treatment.