Finding SMA in Unexpected Places
Not long after our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA), my mother received a note from her cousin, who mentioned her two granddaughters’ “muscle disease.” Having believed for years that the girls had spina bifida, we learned quickly, though not totally shockingly, that the sisters had a milder form of SMA. They would reach adulthood before the younger sister passed on.
I was assigned to teach at Brockman School, a self-contained setting for students with orthopedic and multi-handicapping conditions. For the first few years, my kindergarten class consisted mostly of students with cerebral palsy and spina bifida, with various other conditions in the mix. Cognitive levels, language skills, and fine and gross motor abilities were all over the place. While a few students walked independently or with crutches or walkers, wheelchairs were typically in greater supply. My charges were delightful.
Eventual inclusion of Brockman’s students into regular schools shifted my duties to primarily skilled nursing my final year. My irreplaceable teaching assistant and I somehow survived what I would discover later was an instrumental learning opportunity.
After Jeffrey’s diagnosis, I mailed out letters to anyone for whom I had an address. I explained SMA, asked for information about alternative treatments and possible contacts, and requested prayers.
Few had much of anything to offer, but the response was still uplifting.
One day, a former Brockman student called. LaMondre hadn’t been in my class, but he was one of my favorite students in the school. He had learned about Jeffrey from my former teaching assistant. As my squeals at hearing from him eased down to a more human level, he said quietly, “You know I have SMA.”
I did not.
To my knowledge, no other student during my Brockman years was diagnosed with SMA. How thankful I was to be boosted by a very special one who had.
It doesn’t take long in a small rural community for word to spread. At one point, the local newspaper did a story about Jeffrey. Back in 1997, when folks actually subscribed to the newspaper, I received a phone call from a man named Johnny Noblett. Since we hadn’t lived here very long, it wasn’t surprising that I didn’t know him.
What was surprising was hearing he had SMA.
Johnny offered help with whatever we might need in the future. His challenges with a substantially milder form of SMA were quite different from Jeffrey’s, but knowing there was a “local” someone versed in SMA provided me with another indescribable boost.
After arriving home from an eventful (and final) experimental therapeutic electrical stimulation session, I opened the car door to unbuckle Jeffrey and saw that he was turning blue! I rushed him inside, suctioning him until he pinked back up and praying we weren’t nearing The End.
Moments later, in the heart-pounding commotion, an unfamiliar home health nurse showed up. She introduced herself as Susan Noblett and explained that she was substituting for Jeffrey’s regular nurse that day. She also mentioned that she’d worked with hospice before.
Minutes later, I learned her husband was Johnny … the local man with SMA.
Someone with expertise in both hospice and SMA had shown up at precisely the time I needed her?
After Jeffrey’s death, my husband, Randy, and I opened a bakery and sandwich shop. We placed a Chunk Your Change for Charity jar on the counter featuring various recipients (mostly SMA-related) and printed handouts about The Three Bears Bakery and SMA.
One day, a customer walked in, read the handout, and exclaimed, “I know someone in Georgia who has twins with SMA!” I knew right off who it was. Dana had emailed about her only two babies, both diagnosed with type 1, as I was still adjusting to the devastation of the SMA diagnosis.
I apparently needed that reminder to appreciate that our assignment was what it was and not something else.
In the summer of 2019, I received a jury duty summons. While waiting for the courthouse doors to open, I noticed a plaque — right where I stood — listing the county commissioners in office when the current courthouse opened. One of the commissioners was Johnny Noblett.
Once selected for duty for an easement case, we potential jurors were questioned for possible conflicts of interest regarding any personal easement issues. I explained that family members associated with an old cemetery on our little mountain had no access until we prepared a road in anticipation of having to bury our baby on top. As if we had an option, we gladly offered road access to them.
Boosted by Johnny’s “presence,” I managed to squeeze in a mention of SMA.
Because you never know who might have needed to hear it.
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.