3 Little Boys at 5 Months, 5 Years, and Almost 5 Years Old
In the fall of 1996, as my husband, Randy, battled a stressful job situation, our surprise pregnancy packed an additional wallop. It also sparked much-needed joy, once we recuperated from the news flash.
Jeffrey’s birth two weeks early, as Randy’s job mercifully ended, provided a perfect boost. He was beautiful, looking exactly like his older brother, Matthew. And what a sweet, easy baby!
The SMA diagnosis came two months later. As if that wasn’t enough of a jolt, the prognosis served as the coup de grâce: probable death by age 4.
Instead, he was 5 1/2 months.
Grandchildren, another rare assignment, and a dose of guilt
Tears fell as I rocked our first grandchild, Clara, at 2 months (Jeffrey’s age at diagnosis) and at 5 1/2 months (his age at death). She’d made it that far with no signs of SMA. We had no clue for several more months that Clara harbored a surprise of her own: Beckwith-Wiedemann syndrome, usually characterized by overgrowth. Thankfully, Clara’s case is relatively mild.
Fast forward to the arrival of Clara’s brother, James. A hefty bundle at birth, James was the spitting image of Matthew (his daddy) and Jeffrey. I won’t lie: Tending to a baby boy who looked exactly like our firstborn and also our “angel” baby unleashed a plethora of emotions I’d presumed were tucked safely away.
“Jeffrey” and “Matthew” popped out of my mouth at least as often as “James” for weeks, maybe months, but he didn’t care. James loved to snuggle, eat, and snuggle some more. By the time he was toddling around, it was apparent to all of us that the newest addition to the family was the delightful equivalent of two little boys.
We blinked, and just like that, James turns 5 this week. Clara declared that he’ll be “a whole hand old!” James is ready for that marker.
On Jan. 14, he was delirious with excitement. On tap for an early birthday present was a trip to attend a Monster Jam show the following day. And he was fast closing in on 5!
That same day, I learned about a little boy in our SMA family whose parents faced excruciating decisions. Junior, the other boy, would turn 5 in two days. My eyes welled up with guilt.
Junior Wilson was diagnosed with SMA at 5 months. His adoring parents, Cassandra and Kafele, learned everything they could about SMA and myriad protocols, helped other families cope, and fought for newborn screening. Like most parents, they strived to provide the best life possible for their sweet boy.
Outdoor activities (fishing, camping, hunting, swimming), YouTube, and Disney movies were some of Junior’s favorites. Like James, he loved to “rawr!”
Near the end of December, Junior started getting sick; as is common with SMA, it quickly escalated beyond the capacity of home care. On Jan. 1, Junior was admitted to the pediatric intensive care unit and intubated. That proved insufficient, and the ECMO (extracorporeal membrane oxygenation) machine took over for Junior’s heart and lungs while he was placed in a medically induced coma.
That wasn’t the end of it. That night, Junior was diagnosed with heart failure from sepsis stemming from a combination of flu A and a bacterial pneumococcal infection. At midnight, surgery was performed on his heart to address the septic damage.
As his heart recovered over the following days, it was discovered that Junior’s lung tissue had developed necrotizing pneumonia, a rare, vicious complication somewhere on the spectrum between lung abscess and pulmonary gangrene.
Junior snagged his angel wings on Jan. 14, two days short of being a whole hand old. His shellshocked folks held a celebration for him on Jan. 16 because that was his birthday.
And then they got back to planning his funeral.
The village, featuring MJ
After SMA’s wrath commenced in our own family, I learned firsthand that when communities are formed through special circumstances, “it takes a village” is an understatement. Besides prayer, having access to other SMA families via the internet was absolutely vital in keeping myself (and, subsequently, the rest of the family) relatively upright.
MJ Purk is a hero of sorts throughout the SMA community. She is loved, respected, appreciated, and admired. Like Jeffrey and Junior, she was diagnosed with the most severe form of SMA. It’s no secret that her caregiver extraordinaire, Brenda Hanson, has contributed mightily to MJ’s recent celebration of her 35th birthday.
MJ penned a beautiful tribute to Junior:
“Jr. was a true embodiment of letting your light shine brighter than all of the fireworks in a July summer night sky. But just like those bursts of bright, colorful, shimmering, brief moments of indescribable joy and truly magical moments, Jr. will live on in the hearts of all who are honored to carry his light into dark places.”
Junior’s light will definitely live on when his baby sister, Charlotte, arrives in May. Be listening for a really big “rawr!”
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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