On August 27th, 2012, our family was blessed with our third child and third son, Cole Parker Randall. Cole was a happy and seemingly healthy baby, though as the weeks went on, he exhibited a noticeable lack of mobility and muscular control. One morning, shortly after Cole reached five weeks of age, we observed in a panic as he experienced rapid breathing and an elevated heart rate. That day, we took him to the doctor, and immediately thereafter accompanied Cole in an ambulance to the Randall Children's Hospital (Emanuel). We spent the next two weeks in the Pediatric ICU trying to identify the cause of Cole's numerous and rapidly progressing symptoms.
After a week that included a battery of tests and meetings with various teams and specialists, Cole was presumed to have a neuromuscular condition (later confirmed by specialized testing done out of The Ohio State University) known as Spinal Muscular Atrophy Type 1 (SMA Type 1). Best-case prognosis was two years, but in Cole's situation, we were told it was more likely to be a number of weeks. The news was beyond devastating. The next week was spent attempting to comprehend our new reality, break the news to our boys, and eventually attempt to stabilize Cole enough so that he would be able to spend his remaining days at home with his family. Throughout it all, Cole managed to smile, somehow making us all smile, and commonly during the most absurd of moments. At one point, while intubated and hooked to a ventilator, with a feeding tube in his nose and a pic line in his groin (because an IV wouldn't take), monitoring equipment strapped everywhere, he broke into a bright smile when his two brothers entered his hospital room. His condition regularly resulted in lapses of breath, often for minutes at a time, after which he would still manage to smile. He never missed an opportunity to smile and amazed those in his presence with his indomitable strength, resolve, and spirit.
When we were finally able to take Cole home, he was oxygen-dependent and required feeding through a direct line to his stomach. He lived out his last four weeks surrounded by the love of family and friends, a mother who did not let him leave her arms, and he forged a brotherly bond that will last forever. Cole passed away in our arms in the early morning of November 10th, 2012. We carry with us his memory and spirit in our everyday life.
Please support us in our honoring of Cole's life, the lessons he taught us, and the lives he touched, as we focus our efforts to support the CureSMA organization, with proceeds benefitting families impacted by the condition and the pursuit of a cure that is projected to be 2- 5 years out.