A few months ago, the national leader of my super cool running group Moms Run This Town shared a unique opportunity with us. MRTT had partnered with a group called I Run 4. I Run 4 was the brain child of Tim Boyle when he began running for a child named Michael, who had Down's Syndrome. The idea grew and I Run 4 is now nearly 7,000 members strong. The purpose of I Run 4 is to match a special needs child with a runner, who dedicates miles, races, and activities to that child.
About six weeks ago, after about a month wait, I was match with my child, Kyan. Kyan is an adorable *almost* two year old little boy who lives in New York who is afflicted with SMA – Spinal Muscular Atrophy. Kyan’s mom describes him as a sensitive, smiley and sweet little boy. His favorite color is red and he loves animals, especially those in the barn yard and zoo. Kyan also rocks some rainbow colored leg socks that I am insanely jealous of and am on the lookout for a pair!
Kyan also has a super cute older brother, Kalen. Kalen also has SMA.
In my nearly twenty years in the field of nursing I had never heard of SMA, so I had to do some research.
The website “Families of SMA” was a great resource. I learned that:
Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
WHO IS AFFECTED:
SMA is one of the most prevalent genetic disorders.
- One in every 6,000 babies is born with SMA.
- SMA can strike anyone of any age, race or gender.
- One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
- 7.5 million Americans are carriers.
I had no idea SMA was so common. It is likened to ALS, Lou Gerhig’s disease.
Kyan’s family is very active in the fight to find a cure for SMA. They even have their own foundation called Kure for Kulas. They are very active in their community and were profiled on local news stations and billboards. These boys are celebrities where they live!
The Kulas Family
Running for Kyan has surely given new meaning to all of my runs. Whenever I get down on myself or feeling like I can't go any further, I think about sweet little Kyan and buck up for him! I think about what his parents wouldn't give to see him run across the house. Hopefully, there will be a day, when Kyan will be able to! Kure for Kulas is helping see to that...a cure for SMA. Check out this sweet family's story and journey to a cure.