SMA does not define us or limit our dreams

I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25% possibility of two children with the same parents having this disease through autosomal recessive inheritance. So when my brother Kevan was born two years later, our parents were somewhat prepared when he received the same diagnosis as me.

SMA symptoms manifested differently in Kevan and me. The progression of muscle weakness and atrophy was gradual and steady in my body, but abrupt and aggressive for him. I could walk with the aid of a walker until I was 10, and our dad adapted Kevan’s first wheelchair for him when he was 4. He battled issues like stomach ulcers and kidney stones, while I struggled much more with my respiratory health.

Besides the physical effects, we responded differently to having SMA. I was fiercely independent and spent many years blazing trails and trying to prove to myself and the world that I didn’t need help to accomplish great things. For Kevan, his disability was an opportunity to use his imagination, be creative, and invite as many people as possible to help him live an extraordinary life. Though our approaches were different because of our personalities, our belief was the same: SMA would not define us or limit our dreams.

We were inseparable playmates, making up our own games and worlds and stories. We could sit still, race around, dream, tell secrets, or cry together. It wasn’t all roses, either; we dinged up each other’s wheelchairs pretty good and left more than one hole in the walls when we fought! But we were the best of friends because we understood each other on a deeper level than anyone else could. And it wasn’t just SMA that we had in common, but also our faith, family, culture, and many life experiences.

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God’s sibling trial

In 2010, a movie was released called “Extraordinary Measures,” inspired by the true story of a brother and sister who had the same rare genetic diagnosis, Pompe disease, and the incredible efforts of their parents and scientists to find a treatment. I watched it with Kevan, because of our mutual love for the actors who represented the dad and the doctor, and it was in that film that we first learned the term “sibling trial.”

In clinical research, there are significant advantages to focusing on siblings with the same disease, as it tends to eliminate a lot of variables that are harder to identify and control in a general population. In fact, some interesting discoveries have been made about SMA through sibling clinical trials.

The movie deeply resonated with me, and after we watched it, I remember saying to Kevan, “We are God’s sibling trial.” We didn’t participate in any research studies, and it was several years later when we first heard about a medical treatment for SMA. But I could see the care and treatment God had already given us both: abundant joy, hope, courage, creativity, and love. And I wondered if maybe he was watching us carefully to see how we would respond to those gifts — how they might impact us and how, in turn, we might impact the world.

We have experienced lots of trials over the years — physical, emotional, relational, and spiritual — and more than once it has been a miracle that we made it through alive. But every time we do, I’ve seen myself and Kevan become stronger, wiser, more compassionate humans. No matter how SMA affects our bodies, I hope that our hearts will remain resilient and true, and that our stories will encourage and inspire others.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.