What this means? Your child has SMA and depending on the age of onset, one of four types. Type 1 has an onset age of zero to six months and is the most severe with outlook and life expectancy not very bright. Katie, type 1, symptoms were noticeable within days after her birth (in hind sight). She lived to be 5 1/2 months old with next to no medical intervention (we used suction as needed and cough assist as needed). She was breast fed until the day she died. She gained weight normally (9lbs to 14lbs in 5 months). We kept her muscles moving and flexible with PT, stretching and assisted exercise changing her position often from side to side, back and belly. She took baths 2 times a day where she could move all of her limbs on her own. She was "perfectly healthy" until her last day, when we administered O2 for the first time and realize that her lungs had finally gotten to a stopping point. When we took her O2, she fell asleep in our home, in our arms within a few minutes. Hospice was here to take care of all of the details and for the first time in 51/2 months, we were all able to sleep through the night.