In August of 2016, Jessica and Ronnie had their hearts broken at the Alberta Children’s Hospital as they listened to son’s doctor tell them their 3 month baby boy had Spinal Muscular Atrophy or SMA. It’s an inherited condition that causes nerve cells in the brain and spinal cord to break down and die. When this happens, the brain stops sending signals to the body’s muscles. Babies with SMA can have difficulty crawling, walking, or even breathing. They were told their beautiful Lewiston would likely not live past two years. While their world changed forever, Jessica and Ronnie made the conscious decision to make Lewiston’s time count – however little he had. And while it wouldn’t be easy, they would live with joy and celebration, and make sure that his life had meaning. A big part of their joy while on Unit 3, where he spent so much of his time, was nurse Jordan who had a very special bond with Lewiston and took care of him like he was her own.
As the months advanced, so did Lewiston’s condition and it soon became clear that Lewiston would not live for two years. Desperate to prolong his comfort and quality of life, Jessica and Ronnie worked with Lewiston’s Neurologist Dr. Jean Mah, who fought to get an experimental SMA drug approved in Alberta. Which she did. While the drug was never going to save Lewiston’s life, it did prolong the quality of it…a little. Jessica will tell you that she’s proud that it was her son who was the catalyst for this drug being available in Alberta because now other babies with SMA will have earlier access to it and perhaps it will give them more time with their families. She feels like they made history. In September, Lewiston began having some serious choking issues and needed to be constantly suctioned as to not aspirate. On one occasion, they were rushed to hospital and between Unit 3, the PICU and then Rotary Flames House, Lewiston never left. The next weeks were an emotional tightrope walk between wanting to fight for their baby’s life and knowing when it was time for him to go. But as long as Lewiston had fight, they would fight for their son. Lewiston spent his last weeks at the Rotary Flames House being cared for by the “angels who work there”. His favorite thing was having his bath, and that’s what they did in his last moments. His little muscles were able to enjoy the freedom of the warm water and after he was swaddled in his towel, being cuddled by his mum, Lewiston passed on November 22. Jessica says they are determined to make their son’s life and his passing have meaning, by taking all of the love they would have given to him throughout his life and pour it into creating their son’s legacy.
To hear more stories from families or to donate to the 2017 Caring for Kids Radiothon in support of the Alberta Children’s Hospital Foundation visit www.KidsRadiothon.com