The little boy was diagnosed with SMA Type 1 last August and died in his parents arms in November. “We knew that he just didn’t have fight left in him and it was the most peaceful passing. It was amazing to have the support of medical staff just so you didn’t feel alone or scared but we felt supported and cared for,” said Jessica, Lewiston’s mother. SMA causes nerve cells in the lower part of the brain and spinal cord to deteriorate and die, which impacts the body’s muscles. The disease is genetic and makes crawling, walking and even breathing difficult for those affected and there’s currently no cure. The drug Spinraza is being reviewed by Health Canada as a treatment for SMA and Lewiston was the first child in Calgary to receive a trial dose. His participation in the trial paved the way for others and his mother says they made every moment of his short life count. “We made every day special. Every day we had a dance party to JT ‘Can’t Stop the Feeling’ and we had the head of maintenance, the nurses, the doctors would come in and it was fun and joyful so we got to make every day of his life count,” she said. Lewiston’s parents are holding a celebration on what would have been his first birthday to honour him and raise money for Spinal Muscular Atrophy (SMA) and the Alberta Children’s Hospital Foundation.
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