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.
Against all odds, Gwendolyn lived to celebrate her second birthday and five more after that. The Strongs used the opportunity to its fullest and refused to let Gwendolyn’s disability keep her from memorable experiences like visiting Disneyland, having a skating rink birthday party, and even completing marathons. Most recently, an entourage of 60 runners participated in the sixth annual Santa Barbara Veterans Day Marathon on behalf of GSF, with Bill pushing his daughter’s specialized 100-pound wheelchair all the way. Through various sponsors, they raised a total of $80,000 for SMA research and advocacy — just one of the impressive feats Gwendolyn has inspired.
A memorial service for Gwendolyn will take place at 3 p.m. on August 2. In place of flowers, the Strong family asks that attendees donate to a special GSF fund in her honor. Though the pain of their loss is profound, they are confident that Gwendolyn’s fighting spirit and remarkable story will continue to inspire others. “In true Gwendolyn fashion, even her death was on her terms,” Victoria wrote in her post. “If death can be beautiful, Gwendolyn accomplished that.”
By Paul Wellman