August is Spinal Muscular Atrophy Awareness Month. I had never heard of the disease until a young woman from my church, whom I have watched grow up, had a son that has SMA.
Since then, I have learned that SMA is the No. 1 genetic killer of children younger than 2, and it can be prevented with testing prior to the conception of a child. SMA is a genetic disease that is tied to a recessive gene that both parents would have to have. If both parents have the gene -- and there is a 1 in 40 chance of having it -- then a child born to the couple has a 1 in 4 chance of having SMA.
For children with SMA, muscles start to atrophy specifically in the spine, arms and legs. There is not a treatment, there is no cure. There are only things you can do to prolong the quality of life, said Jennifer Chaput, of Families of SMA.
Katie Dunston Holter, the prettiest little girl I ever saw, has now grown into a beautiful young lady. Her son, Wyatt, was diagnosed with SMA when he was 2 months old.
The biggest thing for me during awareness month is to let people know how many are carriers, Katie said. There is a 1 in 40 chance of being a carrier. You can be tested and know your carrier status.
Knowledge is power. This is the genetic disease closest to the cure. The cure wont come if no one is fighting for it.
Wyatt has just turned 1, and like most children with SMA Type 1, he doesnt have a long life expectancy. Katie said the general rule is that children with SMA dont live to their second birthday, but that depends on a lot of things. For the most part, according to Katie, children succumb to respiratory-related illness, so the biggest thing is being proactive when it comes to germs.
For Katie and her husband, Josh, the news that Wyatt had SMA was devastating.
But we soon realized that we couldnt mourn his death before he is gone. If we did, we would miss out on the time that we have now.
While Katie does not know of another family in the area with a child with SMA, she said she hasnt felt alone in their journey.
Through social media, I can reach out to others and ask questions, Katie said. We have also been so blessed with community support, family and friend support.
Part of that support manifested itself on Wyatts first birthday, Aug. 6, when friends and family gathered at the Holter home to wish Wyatt a happy birthday.
I had asked people to light a candle for his birthday and wish away SMA. But it was supposed to be online. Somebody came up with the idea to come to our house with their lit candles and sing Happy Birthday outside. We were overwhelmed, Katie said.
This baby has been shown so much love. In the beginning, I would think, Why does Wyatt deserve this? Why does our family deserve this?
Now I think, what did I do to deserve Wyatt? The lives he has touched, the people that have been blessed by Wyatts story. The blessings have just poured over us and our needs. If we think of something we need, it just seems to flow down from heaven.
Next week, to continue our focus on SMA Awareness Month, I will tell you about something you can do to help Wyatt and other children like him.
Contact Alline Kent at 396-2467 or email@example.com.