When SMA and ALS connect in a good way

Life for our family has never been dull, but after our fortuitous move to the North Carolina mountains, “never dull” acquired new meaning. A blizzard hit a week after our arrival, flying squirrels gnawed their way into our dining room, and snow kept students hunkered down at home at least partly every week until mid-March.

Surprises kept on surprising. My husband, Randy, a high school football coach, unexpectedly found himself changing schools. Early in the football season, as he discovered disconcerting conduct in his new school, I learned I was pregnant. Like their shocked parents, our children, Matthew, then 10, and Katie, then 7, expressed a mixed bag of reactions to the announcement. Randy and I braced ourselves for a newborn in our mid-40s.

As the school year mercifully wound down, so did Randy’s coaching contract. The urgency of my husband securing gainful employment was simultaneously offset and intensified by baby Jeffrey’s early arrival on May 18, 1997. Jeffrey was a surprisingly easy baby; I considered it a reward for our faith that a positive job opportunity would materialize at the right time. When one of our dogs was hit and killed by a car weeks later, Jeffrey’s sweet, equable nature served as a much-welcome distraction.

Eight weeks after Jeffrey’s birth, the mother of all never-dull surprises upended our life like an enraged bull in a china shop. The bull was the leading genetic killer of children younger than 2. Jeffrey was the china shop.

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‘Children’s version of ALS’

In the days following his birth, Jeffrey stood strong in my lap and looked around. However, he nursed only minutes before falling asleep, his cough and cry barely registered above a whisper, and his movement gradually petered out. I somehow attributed it to the summer heat and lack of air conditioning in our old farmhouse.

On July 14, 1997, Jeffrey was unofficially diagnosed with a severe case of the deadliest form of SMA. The pediatric neurologist soberly explained that the muscles controlling movement, sucking, swallowing, and breathing (pause) would eventually stop functioning.

I heard words coming from the doctor’s mouth, but couldn’t connect them to our baby. He drove the stake in farther: Randy and I were carriers, there was no treatment or cure, and most children didn’t make it to age 4.

Before we could digest all that, tests to confirm the diagnosis commenced. Jeffrey’s arms were secured above his head for the chest X-ray (generating his first wails), blood was drawn from his heel, and chest physiotherapy began. The following morning, Jeffrey endured a torturous blood draw from his forehead for the new SMA test and an excruciating electromyogram to test for muscle activity. We both cried.

Once home, while searching online about our new assignment, I often saw SMA described as the children’s version of ALS. SMA may have been foreign to me, but I knew about Stephen Hawking, whose brilliant mind resided inside a debilitated body. I didn’t even want to think about Hawking’s mind or body or Jeffrey’s reportedly brief time with us.

And I never dreamed that one day I’d be genuinely thankful for our involuntary assignment. Or that one day I’d find myself making friends who were writing about their own rare disease battles, including with ALS.

Connecting with a new columnist (and his daughter)

Bionews columnists are divided into groups. SMA, Alzheimer’s, multiple sclerosis, muscular dystrophy, and ALS are among those included in my group’s focus. We’re introduced to new columnists on our respective teams and/or to columns from any team with a particularly broad appeal. Every column I’ve read has made me want more.

James Clingman joined our group in the fall of 2022 as an ALS writer. James is a former adjunct professor, author, business consultant, and bicycle racer. While writing seems a natural for James, ALS mandates adjustments. Consequently, his daughter, Kiah, helps. In reading his introduction, I detected enough of a connection that I included him in my own column.

This past spring, Kiah relayed that her dad hadn’t felt well and would love to receive cards. I wrote Kiah to see if he might like to listen to my late mother’s original music. In short order, she said yes, and a collection of Mom’s music was shipped on its merry way.

They say the apple doesn’t fall far from the tree. In addition to being a devoted daughter, Kiah’s prodigious résumé includes acclaimed acting, writing, and producing stints. Her “Eavesdropping on the Elders,” inspired by her father, won the 2021 Best Short Feature Presentation in the Morehouse College Human Rights Film Festival. Amid many achievements, one jumped out. Kiah had a recurring role in the TV series “Ordinary Joe,” created in part by Garrett Lerner and featuring a character with SMA. Garrett’s son, Zeke, has SMA.

There are differences between SMA and ALS — causes, treatments, typical ages affected, etc. However, both SMA and ALS are progressive motor neuron diseases that affect mobility and the muscles used in swallowing, speaking, and breathing. Both are undeniably devastating.

As I’ve learned before, though, sometimes devastation may just spark a new friendship.

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.