Guest Voice: Seeing the light after my son’s SMA diagnosis

Our journey was rough from the start.

During a well child visit, I shared concerns that something was going on with my son, Luke (call it mom instincts). We were referred to a neurologist and then a brain and spine specialist where Luke had three blood tests done, one for spinal muscular atrophy (SMA).

After weeks of waiting, the SMA test came back positive. Luke had the disease.

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I felt shocked, heartbroken, and confused after receiving my son’s unexpected diagnosis. I asked what could be done and the only answer was to research stem cell treatments.

At the time, there were no treatments for SMA, no cure, nothing to be done to fight it. We moved forward in a haze of confusion and sadness, grieving the life we thought Luke wouldn’t have. We felt hopeless, really.

We reached out to Families of SMA (now Cure SMA) and they sent us information on this awful disease. We struggled with the diagnosis and what it would mean for our son.

Finding hope in life with SMA

About six months later, my father-in-law called and said that he and my mother-in-law wanted us to go to the Annual SMA Conference, happening in California that year, and that they were buying the plane tickets for us. We weren’t sure we wanted to go. We were fearful of what we’d learn and see, and we were feeling so hopeless already.

But we went, we saw, we learned, and we came home with more than an awesome trip to Disneyland. We came back with hope for our son’s future.

We quickly came to the conclusion that we wouldn’t waste time being sad about all the things Luke wouldn’t be able to do; instead, we’d make sure to find a way for him to do whatever he wanted. We stopped living in fear of the future, or lack thereof, and started living in the moment.

Since that time, a few SMA treatments have been approved by the U.S. Food and Drug Administration, and Luke has been on them for several years.

Today, Luke is a determined, creative, and passionate 15-year-old with a huge heart for others. He loves God, youth group, drama club, and art classes, and he goes adaptive water skiing, zip lining, and plays power soccer. He dreams of playing for the U.S. Power Soccer National Team and going to college for architecture. He dreams of traveling the world and lets nothing get in his way.

Watching Luke live his life to the fullest and seeing how determined he is to reach his goals is the best feeling in the world. Letting him live without our fear holding him back has made all the difference in his life, as well as ours.

Our world has changed since we thought our son had been given a death sentence with his diagnosis, and felt so hopeless and helpless. Now we’re watching all the wonderful things Luke does and seeing him become the strong, passionate, godly young man he is. I often thank God for the blessing of taking the blinders of hopelessness off so that I could witness Luke’s bright light shine.

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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.