Charlotte & Wayne lost their first daughter Annabelle Rose when she was just 7 months and 12 days old due to a genetic muscle wasting condition called Spinal Muscular Atrophy. Annabelle had Type 1 which is the most severe form of the condition an...
My son Grady was born on May 15th 2015. He wasn't due until June 19th but since I had polyhydraminos my water broke on May 13th. I had noticed while I was pregnant that Grady didn't move near as often or as much as my daughter did during my first pre...
I was born on March 5, 1949, in a poor neighborhood of Lima, Peru, in a time where most houses had no electricity and radio music was a luxury only afforded by the few. The television had not yet come to the country and Internet was unimaginable....
My daughter has a SMA type1 , the start of the disease in 5.5 months. She is 17 months. She is breathing on her own. Little holding her head. Raises handle. She begins to talk.
No less than two neurologists have diagnosed me with SMA, but I have to say, I'm pretty sure I DON'T have it.
I'm strong, graceful and powerful... the only symptoms I'm experiencing are speech slurring, weak tongue and lips and mild difficulty breat...
14 people with Spinal Muscular Atrophy have taken the SF36 survey. Mean of Spinal Muscular Atrophy is 1379 points (38 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
