Need advice

I could use some advice. On Dec 11, 2006 my Daddy literally died in my arms after battling with FSHD.

Today 8-8-08 my best friend called to say the DNA test came back and her 6 year old son has Duchenne. I see them every day and I don’t know what to say. I don’t know what to do. I thought I would be able to handle this better because I have already been through it once but I am lost. Any thoughts?


The future of DMD is much different now. For some, like my son, there are already working treatments. For the other boys other treatments are on the way. Your friends can have alot of hope for thier son and as a friend you should try to help them see that if you can. I’m so sorry for your loss. Hopefully their path will be different.

Here’s my son’s blog. He is on PTC124 and it is working.