Filling the boot is a time-honored tradition, for but for Seattle, WA Local 27 fire fighter Jamie Scott, it’s also personal. His daughter, Mari, was diagnosed with spinal muscular atrophy (SMA) when she was only six months old.
SMA is a genetic disease affecting the central nervous system, peripheral nervous system and voluntary muscle movement (skeletal muscle).
“When she was diagnosed, the clinic where she needed to be treated was not in-network with our health insurance,” explains Scott. “We were so thankful that MDA stepped in and covered the treatment.”
Doctors told the Scotts that Mari would likely not live to see her 10th birthday. But they did not let the prognosis keep them from fighting for Mari and other children diagnosed with similar conditions. Their determination led them to participate in their first Fill the Boot campaign.
Scott was not yet a fire fighter but had heard about filling the boot through MDA and his community. “Mari was always a helper,” says Scott. “When we told her about the fundraiser, she was excited to do it. So, the two of us joined my future brother and sister fire fighters to raise money for this wonderful charity.”
Not long after Scott’s first Fill the Boot event, Scott applied to become a Seattle fire fighter and was hired in 2016. As a member of Local 27, Scott continues to Fill the Boot every year. “I continue to support MDA because it shines a spotlight and creates a space of support and hope for families like mine who need help finding treatment and resources,” he says.
Mari died peacefully surrounded by her family and her dog when she was three. “Her life was short, but she was an old soul who made every second count,” says Maya Scott, Mari’s mother. “We honor her memory with love and in our service to our community.”