Impact: SMA It Forward

Nevada / Aug. 13, 2012 / by Gelb
Impact: SMA It Forward

Type 1 Spinal Muscular Atrophy (SMA) is a genetic disease that completely inhibits movement in newborns. They cannot swallow or breath. Death usually occurs within about 18 months. Now 15, Cashel Gardner and his sister Allie are proving conventional wisdom wrong.

They are not just showing that living with the disease is possible, Cashel decided to start a Facebook group called 'SMA It Forward' to, "teach the world about Spinal Muscular Atrophy and show them all the AMAZING kids with SMA, so they can see we do have good and worthwhile lives even if we cannot move, breathe or eat on our own."

Within six weeks, there were over 3,000 likes for the page.

When asked about the success, Cashel's mother, Sandy points to Cashel's personality, "Cashel has always been very outgoing and enjoys talking to people, but he has been limited to the people he can talk to since he doesn't leave his bed. He talks to me, our family and his teachers. After he started his page his world became huge!"

When asked about what life is like with SMA, Cashel notes the difficulty in answering that because he has never known any different. His daily routine includes breathing treatments with a machine called "The Vest, that uses air percussions to shake our chests to make sure no mucus builds up and causes pneumonia." The whole process takes 2-3 hours and has to be repeated at least twice a day.

SMA affects nearly 1 out of every 6000 births. There is currently no cure.

Cashel and Allie need constant help in order to go about their daily routine. 

"We need our family to do everything for us from itching a scratch to turning the channel on the TV. Everyday our parents change our position on our beds so we don't get back aches or bed sores."

When asked about how his Facebook page has turned out, Cashel's excitement about educating people about SMA is clear, "My original goal was to have 1000 likes by the end of the first month. We got 1000 in just 6 days. I was and am still surprised by its popularity not only in the SMA community, but also by everybody that had no idea what SMA was before they were introduced to it."

The page has allowed Cashel to meet and interact with people all across the world in his efforts to showcase his and Allie's story and encourage others to learn about the disease and experience the true joy that they feel every day. 

Sandy hopes everyone who learns about Cashel and Allie can see their happiness and how thankful they are for being alive.

"When anyone meets Cashel and Allie they see that they are truly happy kids. Everyday is fun and enjoyable to them. I think people get a better perspective of how they should live and view their lives. So many people take for granted the simple things they can do everyday."

The 'SMA It Forward' Facebook Page, at last count, had 5,258 likes. To find out more about Cashel, please visit the page here.