Spinal muscular atrophy is a progressive neurodegenerative disease that affects the central nervous system, peripheral nervous system and voluntary muscle movement, according to the Muscular Dystrophy Association. It impacts approximately 1 in 11,000 births in the U.S. and about one in every 50 Americans is a genetic carrier, according to CureSMA.org.
The rare disease is characterized by muscle weakness, difficulty breathing and limited mobility, among other things. The diagnosis is confirmed through genetic testing, which is how Nicole Clark of Caddo, Oklahoma, found out her youngest son, Brady, has SMA Type 2. While the disease is incurable, Brady has flourished with treatment and now his family wants to raise awareness of the disease — and send a message to other families that while this journey is scary, there is hope.
Don’t Google. That’s my advice. I wish I had taken it when I found out Brady had SMA.
Brady was about nine months old when I realized something was wrong. He could pull himself up to a high kneel, but despite his best efforts couldn’t move beyond that physical milestone. At 10 months old he went from using a typical crawl to get around to only being able to go a few feet before lying down. That’s when we sought medical help.
Brady was immediately referred to physical therapy, but my mama gut told me to have genetic testing done as well. Still, when he was diagnosed with SMA, I was in denial. “No, no, no, my baby does not have that,” I cried. But he did. And from there, treatment moved at lightning speed.
It was just 19 days later Brady received gene therapy in the form of a one-time intravenous treatment from his neurologist. Brady began to do things Google said he never would. His progression has been amazing. Two years later, he’s still making progress.
He has physical and occupational therapy a few times each week. My husband and I worked remotely before his diagnosis, but we’ve still had to make adjustments. Every week we go over the schedule to see which appointments we can each take him to. We’re fortunate to have great support systems within our family, who will also step in as needed.
Brady doesn’t mind going to the appointments. We told him that just like his big brother has to go to baseball practice to be a better player, he has to go to therapy to master certain skills. That was like a lightbulb for him. He gets excited for therapy — it’s like play to him.
We want people to see Brady first, and SMA as just a part of who he is, because that’s what we see.
That’s not to say raising a child with SMA isn’t also challenging, because it is. But like his grandpa says, “It’s hard to have a bad day when Brady is around.” He brings a smile to everyone’s face. When we go to church or the grocery store, he has to greet everyone — from the most elderly down to the tiniest infant. He’s like a magnet, drawing people to him wherever we go. He loves horseback riding and playing with friends and going to Bible school. We want people to see Brady first, and SMA as just a part of who he is, because that’s what we see.
Despite his progress, I worry. I’m his advocate. Before we go anywhere, I have to make sure it’s accessible. Will he have seating access? Where will I put his walker? Those are things I never thought of before Brady. We plan our evenings to make sure he is home early enough to rest, because he can become extremely fatigued. Before we commit to an event or going somewhere, we have to look at the times, how long we’ll be there, what activities Brady will be doing. We’re always thinking, “How will this affect Brady tomorrow?”
I worry that when he gets older he will think there’s something “wrong” with him. I want him to know that he is more than his diagnosis. So we push him to continue to be excited and confident. To keep being the same kid who loves the rodeo and yelling “yeehaw!”
Every day we keep pushing forward. We lean on our doctors, therapist and specialist. We set small goals and keep track of progress. We keep our eye on the big picture. Still, some moments are so incredible they take our breath away. For us, it was when Brady was about 2 ½ years old — up until that point, we had to carry him to his walker and get him situated. Then one day, as if it was no big deal, he just got to it and set up all by himself.
This path we’re on is one where I learn from Brady daily. If I could go back to the time of his diagnosis I would tell myself this journey is going to be so hard but more rewarding than you ever thought possible. That SMA is hard and it never goes away, but your child is a warrior.
As told to Genevieve Brown