Early Saturday morning, seven-year-old Gwendolyn DeBard Strong passed away peacefully at her Santa Barbara home after a lifelong battle with spinal muscular atrophy (SMA).
A blog post by Victoria Strong announced her daughter’s death on Sunday. “She looked at us without fear or worry,” Victoria wrote. “We knew she was ready. We knew.” Gwendolyn had been fighting for a month against waves of fever and bodily discomfort, despite lab test results that indicated she was not sick. Though her walking, breathing, and eating had been impeded all her life, the fevers were not a common symptom of her condition. This led the Strongs to believe that the turn for the worse was something “out of her body’s control.”
SMA, also known as baby Lou Gehrig’s disease, lives in a recessive gene carried by about one in 50 American adults and remains the number one cause of death in infants, according to research by the nonprofit Cure SMA. Despite these grim statistics, medical professionals can actually conduct a simple blood test to find out whether or not a prospective parent might carry the gene. The only problem, as her parents Bill and Victoria soon discovered, is that few couples know to ask for the test, and few doctors know to offer it. Shortly after Gwendolyn was diagnosed at six months old, Bill and Victoria started the Gwendolyn Strong Foundation to promote awareness about the disease that they thought was going to take their daughter’s life before her second birthday.