my boy, liam

August is SMA Awareness Month so I decided to write a little post about Liam today. Not all of you know this, but my three year old son, Liam, has a neuromuscular disorder called Spinal Muscular Atrophy Type II. He was diagnosed when he was 14 months old and before then, I had never even heard of SMA. This seems strange because it's a fairly common rare disorder: 1 in 40 people are carriers and 1 in 6000 babies are born with it. It is an autosomal recessive genetic disease which means that both parents must be carriers and both must pass the gene on to their child. Raising awareness for SMA is tough; in our culture, unless someone famous champions the cause, it's very difficult to get the word out. So this is my small (very small) way of perhaps increasing awareness. I'll just begin with the basics about Liam; there will be more posts to follow ... More stories about Liam, maybe some videos of him if I can figure out how to upload those, all about our fight with insurance -- there is lots to tell if the interest is out there ...

SMA ranges from Type I (the most severe) to Type IV (adult onset). 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 last March. At home, he spends anywhere from 3-6 hours per day in his Rifton Dynamic Stander, wheeling himself all around the house and studio. Standing is excellent therapy for Liam, but in order to have him in his stander each day for such a long period of time, we tend to stay home a lot. Of course, we take breaks and we go to physical and occupational therapy twice a week, but being able to work from home is priceless.

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 three year old I and before know. Then again, he’s not your typical three year old… Perhaps it’s clear as day, but I am immeasurably changed by Liam.

You can learn more about SMA here and see more photos of Liam on my website under the ABOUT ME section.

I'm off to work on calendar designs ...