Sorry, not to derail the thread, but my wife has FSH muscular dystrophy. When we had my son we thought it skipped him (FSH is a 50/50 chance of getting it), but it started showing a few months after birth.
At the age of 5 he suddenly started having spells where he would stop breathing if he got upset, scared, or agitated. He did it twice that year, once at school then again the next day at his neurologist. We were told he had seizures and was put on meds.
Everything went well for about two years, then last year August 16, 2012 he stopped breathing and was life-lined to the Peyton Manning's Children Hospital where they put in a mic-key (because he wasn't gaining weight) and a tracheostomy tube in his neck. Now he stays on a laptop vent set to CPAP settings all day. I've not heard him talk for over a year now.
Last picture we have of him, during his power chair donation from Darrell Gwynn, the year before he had his trach.
http://darrellgwynnfoundation.org/blog/wp-content/uploads/Caleb-Weaver.jpg
Now at night, he sleeps in a hospital bed in the front room and I sleep in the recliner by him. That is why I have so much time to post here because I'm always in front of my laptop unless he or my wife needs something.
Sorry, I derailed the thread :(.