Spinal Muscular Atrophy

What would you do if you had an infant with a genetic disorder called SMA (spinal muscular atrophy). SMA Type I is a terminal genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves. If the infant was diganosed 6 wks after being born, and is now a year old what would you do? He has outlived what the doctors suspected, but is not improving. Please help with any suggestions! Tweet