Finding inspiration in the new year to make a positive impact
Looking to those who've gone before us to guide us onward
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Last year sprinted to the finish line at breakneck speed. I couldn’t have stuffed much more into December’s calendar. Wrapping presents, finishing intense seasonal activities and mandatory year-end tasks, fulfilling copious obligations, and escaping to Charleston, South Carolina, for a delightful family getaway left no calendar square unscathed.
Due to the holiday schedule, I did not have the usual second column to write in December. I relished the break but was prepared to scrounge for cues to spark my rusty brain for this column. Unexpected sources have helped with this in the past: a tiny blue feather on the ground, the introduction of a new fellow columnist, and a Hurricane Helene connection.
A birthday poem prompted a rescue this time.
A welcome into the SMA community
In July 1997, our beautiful third baby, Jeffrey, was diagnosed with a severe case of the deadliest form of spinal muscular atrophy (SMA) at 8 weeks old. After recovering from the shock of the prognosis — probable death within two years — an early order of business was to get hooked up to the internet.
I’m impressively inept when it comes to technology in any form. However, determination and desperation to learn about our assignment with a rare genetic killer trumped my tech dread. Within minutes of my initial internet landing, I unearthed message boards from a group called Families of SMA (now Cure SMA). I felt the first glimmer of calm and hope. Not only were we not alone with this unimaginable nightmare, but I could also tell we were in the midst of some extraordinary, welcoming folks.
I still firmly believe that. With a few email exchanges shortly after Jeffrey’s diagnosis, I snagged a new BFF. I still keep up with as many of those early families as I can. As a remarkable bonus, several children whose families I met many years ago are now fellow columnists for SMA News Today!
Due to the nature of the SMA beast, many others are no longer with us in the earthly sense. That doesn’t make them any less influential. Margaret Jo “MJ” Purk was one of those people.
The joy and miracle of the SMA family
Both of Tim and Beth Purk’s daughters — MJ and Emma — had SMA. The girls were very young when Beth tragically died, and Brenda Hanson was hired to help take care of them. Then, when MJ was 4, Emma died.
Exemplifying unmatched loyalty and devotion, Brenda remained by MJ’s side for over 30 years. Together, they created a remarkable altruistic legacy, including sending blankets to newly diagnosed children and promoting children with SMA (here and gone) in countless videos and calendars. Thanks primarily to Brenda’s unwavering dedication, MJ’s influence reached well beyond the SMA community.
Almost two years ago, with Brenda still at her side, MJ took her final breath.
Tim penned a poem about MJ titled “My Daughter,” and it popped up on my Facebook feed on Jan. 8 — what would’ve been MJ’s 38th birthday. The poem offers a tiny glimpse into what made MJ a prodigious role model for so many people. Although it’s impossible to pinpoint the perfect snippet, this sums MJ up: “Those who watched as she burst through/ each new challenge becoming/ Her whole self/ Her true self/ I got to watch it all.”
Over the years, MJ’s untold hospitalizations with multiple mysterious and perilous issues kept us glued for updates from Brenda. More than a few times, the situation simply seemed too dire until we remembered that it was MJ, the Energizer Bunny extraordinaire. She did keep bursting through each new challenge with renewed determination until she was satisfied that she’d given her incredible life her all.
MJ exuded grit, grace, gratitude, creativity, and aptitude, but she wasn’t alone. I noticed upon our introduction to SMA that the description applies to the SMA community in general.
Even after her death, MJ continued to encourage, support, and humor others while plotting ways to do more. Regardless of pesky medical complications, her optimistic doggedness kept Brenda on the move with perpetual projects, all of which were intended to benefit someone else.
MJ’s full impact will never be known, but you know what? That goes for the impact any of us makes during our time here, regardless of the duration. Jeffrey’s earthly stint, completed in less than six months, was almost 29 years ago. Yet I’m still recognizing bright spots from our sweet boy’s brief stay.
May we strive this new year to utilize our abilities in a way that benefits not only ourselves, but also others. We all make some kind of impact on others. Let’s make it the good kind. Thanks to MJ for setting such a stellar example.
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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