Enjoying the Cure SMA conference without attending

As the annual event approaches, memories of past meetings there inspire hope

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by Helen Baldwin |

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Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997.

Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the elementary classrooms of our older children, Matthew and Katie, promptly ended, so did my need to get dressed up. That was a welcome break.

When Jeffrey was a month old, my mother-in-law, Nell, hopped a bus in small-town Texas and rode several states over to our old farmhouse in the North Carolina mountains. She cuddled her newest grandbaby and enjoyed catching up with Matthew and Katie.

During her visit, I had a thyroidectomy, a fun little event. My mother accompanied my husband, Randy, and me to the doctor’s office so she could tend to Jeffrey. Mom said he was a champ with his first-ever bottle and unbelievably quiet the whole time.

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Two days after Nell headed back home, Duffy, one of our dogs, was hit by the mailman’s car. Piercing screams from Matthew and Katie, who had been playing outside with the dogs, followed the sickening thud. Randy was running errands, so Matthew and Katie watched Jeffrey while I helped Duffy stagger up the bank in time for Randy to return and rush him to the vet. Duffy died shortly after.

Six days later, my doctor brother, Paul, briefly examined Jeffrey to see what might be causing his abdominal breathing. His findings included a dull-sounding lung and no reflexes.

Upon seeing Paul’s unusually solemn expression, the itching from the prolific poison ivy I’d acquired during the Duffy rescue escalated to the next level, and the next.

I clawed my skin as utter fear gnawed at my head and heart.

And it was just the beginning.

Scary pondering, scary reality

Unable to sleep that night, I pieced together some curious moments from the pregnancy and Jeffrey’s first couple of months. Panic set in when I pondered that Duffy’s untimely death may have been a rehearsal for something even more ominous.

The following morning, Randy and I took Jeffrey to his scheduled routine checkup. That afternoon, we headed to Brenner Children’s Hospital for a consultation with a pediatric neurologist.

That night, July 14, 1997, we became an unofficial SMA family (though confirmation came later). It wouldn’t be for long in the active sense, but that wouldn’t matter. Life had changed forever.

The SMA conference (I didn’t attend) that enhanced my life

The neurologist informed us of an upcoming conference for SMA families with researchers and physicians. He said it would be beneficial.

He was likely right. Still reeling from the devastation he’d tossed our way, however, we didn’t feel up to traveling with so much unknown.

But a conference benefit came indirectly to me the next month, through an online post. Cindy Schaefer, mom to my fellow columnist Kevin Schaefer, posted on the then-Families of SMA message board that she and her husband had just attended the very conference we’d bypassed. They wanted to start a North Carolina chapter and were looking for interested families.

The Schaefers live about three hours from us. I wasn’t sure how I could help from so far away and surrounded by so many question marks regarding Jeffrey, but I was so eager to connect, I couldn’t type fast enough.

Because of a conference I didn’t even attend, an extraordinary, steadfast friendship was born.

Enjoying reports from the SMA conferences

Our active SMA assignment ended less than three months after Jeffrey was diagnosed, when he snagged his angel wings. Meanwhile, the annual Cure SMA conferences, with increasingly impressive attendance, seem better every summer. I love seeing photos of families I’ve “known” for years.

Last summer, Cindy reported from the conference that it was impossible to tell which little ones had SMA (and early treatment intervention) and which ones were unaffected younger siblings.

As if that weren’t exciting enough, she sent a picture that left me squealing in disbelief.

Two ‘blessings’ meet each other

Almost 40 years ago, I taught kindergarten at Brockman School in Columbia, South Carolina. Brockman, a self-contained school for children with orthopedic and multiple handicapping conditions, was small; we all knew one another. LaMondre Pough, a smart student with dry wit, determination, and a beautiful singing voice, was an overall favorite.

When Jeffrey was diagnosed with SMA, I mailed letters to everyone we knew, hoping to glean an inkling of hope about our nightmarish challenge. Ruthie Fay, one of my delightful teaching assistants, told LaMondre, and he called. He asked if I knew he had SMA.

I had no idea, but the news brought an inkling of hope!

LaMondre, a natural motivational speaker, eventually met Kevin Schaefer, and the rest, as they say, is history. They’re now friends and fellow inspirational SMA warriors.

In a hotel conference room with orange and red carpet, a man wearing a sport coat, white shirt, and mouse ears stands next to a woman in a black top.

LaMondre Pough, one of the biggest blessings from my teaching days, with Cindy Schaefer, one of the biggest blessings of our SMA assignment, at the 2022 Cure SMA conference. (Courtesy of Cindy Schaefer)

Seeing Cindy and LaMondre together made me feel like I was there at the conference. I’m eager to see what happens when the 2023 conference begins tomorrow!

And as I’m attending virtually again, I don’t even have to get dressed up.

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.


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