My son, Liam, was diagnosed with Spinal Muscular Atrophy Type II at 14 months old. Spinal Muscular Atrophy (SMA) is a neuromuscular disorder that can affect anyone of any age, race or gender. One in 40 people carry the gene that causes SMA; one in every 6,000 babies is born with it. It is an autosomal recessive genetic disease, so in order for a child to be affected by SMA, both parents must be carriers of the abnormal gene and both must pass this gene on to their child. When both parents are carriers, there is a 1 in 4 chance that their child will have SMA. Before Liam was diagnosed, I’d never heard about SMA before even though it is the number one genetic killer of children under the age of two. Please help educate your self and others about SMA. I believe awareness is the beginning of change.

Liam is a very strong Type II. There is a lot of variation even within each type, but Liam sat up by himself and crawled within his first year. It was shortly after his first birthday that we began to notice that he was losing physical abilities. He was still able to sit up when placed, but had lost the ability to come to a seated position all on his own. He was crawling less and less and no longer pulling up to his knees. He was diagnosed in early July 2005. What this means for our family in the day to day is that Liam does not walk, but uses an amazing power chair which we brought back from England in March 2006.

Spinal Muscular Atrophy is a purely physical disorder, so cognitively Liam is more than fine. He began talking at 11 months old and hasn’t stopped since! He’s full of songs and stories and smart as a whip. He’s a bright and curious little boy – so like many others and, at the same time, so unlike them. Liam’s SnapDragon chair allows him to explore the world around him on as many levels as possible. His Snappie has an elevator that lets him, by himself, go down to floor level and back up again. He can get down on the floor and play. He can give rides to his friends. He can race around outdoors. He can go on a bumpy road to pick blueberries in the summer. His Snappie lets him go fast – much faster than any other five year old I know. Then again, he’s not your typical five year old… Perhaps it’s clear as day, but I am immeasurably changed by Liam.