We were told to come back in a year to "see how he was doing." To see what? To watch the progression of his muscle loss? Were they planning to just study his muscles & record his physical decline?
We began searching for information on the internet - seeking resources, answers, options, treatments, support. From 2003 to 2004 I think our family just survived and tried to live as if nothing had changed. Brian stopped rowing on the local crew team and spent more time in his room playing games & listening to music on the internet. It was his junior year in high school and he had to face a diagnosis of a progressive condition that would impact every aspect of his future. He shared this "secret" with no one.
As a mom, I worried about the needs of the other children in the family. I felt that FSH should not rule our home nor impact their lives. I worried that FSH might cast a shadow over our entire life. We soon realized that we had no other choice.