What does an SMA diagnosis have in common with a soccer match?

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by Helen Baldwin |

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It’s almost a wrap for this year’s May madness. Whew.

For me, the month commences with the birthday of a favorite former student and ends with that of a good friend, as well as my nephew’s wedding anniversary. In between are Mother’s Day, spring sports, end-of-school chaos, and the birthdays of our daughter-in-law, yours truly, and other friends and family.

May is also the month we celebrate the birth of our bonus baby, Jeffrey, in 1997. His due date was supposed to be June 1, but my doctor announced during an exam a few weeks earlier that “I’m going to the beach in two weeks. Don’t have the baby!”

I showed him. Or rather, Jeffrey showed him — on May 18.

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There was no question that I was ready to greet our third child. I waddled like an overindulgent sloth into the emergency room early that morning, determined to do whatever it took to make our family of five official. The receptionist — doubtful, given the due date — checked me in.

Shortly after getting situated in the delivery room, we were holding our new addition. Arriving two weeks early, Jeffrey was smaller than either of his siblings, Matthew, then 10, and Katie, 7, had been at birth, but he was another beauty. I attributed his opting to sleep over nursing for the duration of our overnight stay to the stifling heat in our room.

Before we were released, my husband, Randy, inquired about Jeffrey’s abdominal breathing, which was noticeable at birth. No one in medical garb seemed concerned.

Grandchildren, sports, and a playoff game

Our grandchildren, Clara, 8, and James, 6, have participated in several recreational sports. Clara has played on a few soccer teams and was on a basketball team until the pandemic shut it all down. She tried cheerleading for the first time last fall and impressed us from the first “Go, Huskies!” with her relentless insistence on practicing cheers whenever she had an audience. She’s eager to begin gymnastics this summer and return to cheering.

Meanwhile, James has played soccer, basketball, and T-ball. He’s giddy about playing flag football this fall. He especially loves to run.

Clara just wrapped up what is likely her final season of soccer. Some of the players on the coed teams were big, strong, fast, older, and experienced. Although she wasn’t nearly as proficient or confident as many of the other players, Clara did her best and was ecstatic when her Team Orange, dubbed the Cheetos, won their first playoff game.

On Saturday, I left Randy, the resident beekeeper, manning our seasonal honey stand by himself and went to cheer the Cheetos in the semifinal game. The opponents scored quickly and thwarted the Cheetos’ efforts to score. With mere seconds left until the first half ended, it looked like the score would remain 1-0.

Miraculously, though, just as the buzzer sounded, a Cheeto kicked the ball into the net, tying the score! The game was suddenly looking hopeful, a victory possibly within grasp.

Life takes an unexpected turn

Jeffrey, an exceptionally contented infant, continued breathing abdominally. He almost always dozed while nursing and never squirmed or kicked. Oddly, I noticed but didn’t worry.

On July 13, 1997, my physician brother, Paul, and his family planned a visit to the family’s lodge. It was Paul’s birthday, so a celebration was in order.

It didn’t go quite as planned. Randy had asked Paul to bring his stethoscope and check Jeffrey out, which he did. His findings were bleak: a dull-sounding lung and no reflexes.

Approximately 28 hours later, a pediatric neurologist at a subsequent consultation sent us reeling. It was his professional opinion that Jeffrey likely had a severe case of the most severe form of spinal muscular atrophy (SMA).

Because medical experts in the late 1990s offered no hope with respect to SMA, Randy and I relied on our frantic selves to find something — anything — to alter the course of our journey.

Besides prayer and asking everyone we knew for possible leads, we turned first to homeopathic options. Someone knowledgeable about naturopathy set up an experimental regimen that included evening primrose oil dropped into Jeffrey’s mouth from a capsule.

Miraculously, at the end of the first full day of high-powered prayers and the evening primrose drops, Jeffrey demonstrated a slightly louder cry, slightly tighter hand grip, slightly increased movement in general, and slightly better head control while being held in a sitting position.

The assignment was suddenly looking hopeful, a victory possibly within grasp!

Things don’t always go as planned

Alas, Clara’s team was unable to keep the opposition from scoring again and failed to score themselves during the remainder of the playoff game. With their season over, the Cheetos were disappointed but proud of their accomplishment.

If you’ve read this column before, you know that our SMA assignment didn’t go as we’d hoped, either. Jeffrey wrapped up his earthly stay a few months after his SMA diagnosis.

This month, he has spent his 27th birthday in the perfect place. And that’s cause for celebration.

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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