In loving memory of a special SMA queen who left her mark

It seems like yesterday that our family was eagerly anticipating the addition of our third baby. On May 18, 1997, the wait ended with the arrival of our sweet Jeffrey!

Eight weeks later, though, a diagnosis of the deadliest form of spinal muscular atrophy (SMA) crushed our dreams with a grim prognosis: probable death before the age of 4. Reeling but determined to outwit the genetic killer, our family bucked the surreal turn of events, scrounging for information, hope, and more.

Through the internet, I quickly and effortlessly bonded with fellow SMA families, thankful that they so graciously shared their experiences. If their active SMA “assignment” had already ended with the loss of a loved one, to me it was still proof that our family could also somehow remain upright, despite the likely outcome.

It’s impossible to list everyone who boosted us during our SMA journey and beyond. I’ve previously written about my good fortune — courtesy solely of SMA — in meeting Cindy Schaefer and others with whom I feel a special bond. Many of them made sure that everyone hurled into the SMA club was welcomed and loved.

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May 1, 2019 Columns by Helen Baldwin

Forget You Not: Keeping Jeffrey’s Memory Alive by Starting a New Chapter

Becoming royalty

She may not have performed formal royal duties, but “MJ Queen-Purk’s” adoring young fans bestowed upon her many years ago the unofficial title of royalty. It perfectly described her status in the involuntary club where we met.

Margaret Jo “MJ” Purk’s remarkable story began on Jan. 8, 1988. She and her younger sister, Emma, were both diagnosed with SMA. When their beautiful mother’s life ended in an automobile accident, their father, Tim, advertised for a caregiver. He couldn’t possibly have imagined the impact that Brenda S. Hanson, who answered the call, would have — not only on their family, but also on the entire SMA community.

MJ was 4 when Emma died. Devotion doesn’t begin to describe the ensuing relationship between MJ and Brenda. For starters, this caretaker extraordinaire tended to MJ’s physical needs, of course. However, MJ had superhuman powers, too, including compassion, creativity, spunk, a sense of humor, and an insistence on doling out optimism and encouragement in every way she could.

One of Margaret Jo Purk’s final graphics to promote rare disease awareness. Her caregiver, Brenda S. Hanson, asked that it be shared as much as possible. (Courtesy of Tim Purk)

Brenda, bless her heart, somehow managed to keep up with MJ and her marathon of projects. In no particular order — because unlike Brenda, I could never keep up — MJ prepared websites for anyone with SMA who wanted one. She organized a drive to send blankets made by volunteers to those newly diagnosed with SMA. My late mother-in-law, Nell Baldwin, delighted in making blankets for this project.

MJ never stopped thinking of ways to be an inspirational beam, especially for terrified families who were new to SMA. She created untold videos of children and adults with SMA, along with a fundraiser calendar showcasing the beautiful faces of those bound together by a gene glitch. I’ve kept every calendar.

To accompany some of the children’s books she had read aloud and posted online, she asked to use music that my late mother, JoAnn Derden, had composed. MJ set up a Prayers Needed for Spinal Muscular Atrophy Facebook page. She also designed graphics, coming up with two designs for this year’s SMA/rare disease awareness efforts.

It would be her last project.

Lemons, lemonade, and a bittersweet farewell

All of MJ’s accomplishments would have garnered impressive accolades in the best of circumstances. In true MJ fashion, though, she battled one harrowing medical crisis after another — sometimes several simultaneously — at times spending months in the hospital. Her complicated issues usually baffled the medical experts, but perhaps not as much as her resilience, determination, and insistence that she wasn’t “done yet.”

She escaped hospital madness and traumatic circumstances numerous times when it defied all logic. With a hefty dose of faith, Brenda’s expert care, and prayers from the queen’s subjects across the globe, nothing was impossible.

On Feb. 28, 2024, Brenda announced that MJ, 36, had quietly taken her last breath at home the previous night. Unsurprisingly, she took flight on her own terms.

As I write this, my eyes are watering due to a mix of emotions: disbelief that this magnanimous force is gone in the earthly sense, and relief that there won’t be any more horrific hospital episodes for her. There’s also giddiness in learning about the signs Brenda began seeing as soon as MJ had had a chance to hug those she’s blessed with virtual embraces for so many years.

The impact MJ left, with Brenda’s help, is indelible. For those who knew her and yearned for an ability to see as much positivity in the world as she did, it seems fitting that in MJ’s final act of generosity, she donated her corneas. Wouldn’t it be glorious if the recipient could see the world as MJ saw it — worthy of kindness, goodness, and gratitude for all?

A colored self-portrait of Margaret Jo Purk, known as “MJ,” who died on Feb. 27 at the age of 36.  (Courtesy of Tim Purk)

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.