Spinal Muscular Atrophy Support

Curtis was a healthy, bouncing baby boy 19 months ago. When he was 5 1/2 months old, I noticed he wasn't holding his head up like he should. After many tests and trips, we got the devastating news that he has SMA [spinal muscular atrophy]. SMA is like Lou Gehrig's disease only in infants. Because he is a baby, he isn't able to reach his milestones like sitting, walking, reaching. His muscle tone is very low. He can't pick up or move his own legs, roll over, or move his arms except from the elbow down. He is considered a "strong Type I" because his muscle tone is so low that he can't make his own coughs to bring up any fluid that is in his lungs. We do that for him with special equipment. He can't eat anything by mouth and is fed from a tube. Anything that he would try to swallow would go right into his lungs. We want to continue learning how to help Curtis live a better quality of life because this is a progressive and terminal disease. We want to help him live as long as he can. We were told he would not make it to his first birthday, but with the education we have received from the American Family Children's hospital, he is already surpassing his life expectancy. The SMA Foundation has offered us a scholarship to attend the National SMA Conference in Kansas City, Missouri. They are covering our tuition for this 5 day opportunity to meet other families, learn about strategies and find out if he can participate in clinical trials to find a cure. We must cover hotels, gas, and meals. We are desperate to get there where we can share our needs and experiences with other families. We want to give Curtis the best possible life experiences and extend his quality life span for as long as possible and until there is a cure.