Elliot Lewis, a Weber State University senior in business administration, and Janell Lewis, a recent WSU dental hygiene graduate, will run 13.1 miles in the Santa Barbara International Marathon to fight the No. 1 genetic killer of young children. The couple welcomed their first child to the world on June 21, 2011. Unbeknownst to them, in just a few short months, their daughter, Blakely, would be diagnosed with a merciless terminal disease.
“At first we thought everything was normal,” Elliot said. “We didn’t have any concerns, and then at about 3 months she started struggling to meet her developmental milestones. After going to a couple doctors, we found out that she had a disease called spinal muscular atrophy, and it’s also known as SMA, and unfortunately it was a terminal disease. . . . We celebrated monthly birthdays.”
Blakely passed away on March 26, 2013, shortly after the Lewis family celebrated her 21-month birthday.
SMA is a terminal degenerative disease for which there is no cure, nor is any treatment available at this time. Approximately 1 in 6,000 children is born with SMA. Of the infants and small children diagnosed before age 2, 50 percent die before their second birthday. One in 40 people worldwide is a recessive carrier for SMA.
Prospective parents can be tested for the disease with the SMA carrier test. The American College of Medical Genetics strongly encourages all adults of reproductive age who intend to have children take this test. A blood or saliva test is all it takes to determine if an individual is at risk for passing down SMA. If two SMA carriers have a child together, there is a 25 percent chance their child will be born with SMA.
Blakely had a gastronomy tube, also known as a G-tube, because she couldn’t swallow; that was the only way she was able to eat. She also had a bi-level positive airway pressure ventilator, also known as a BPAP. The BPAP actually breathed for her. Elliot said it’s like these children are running a marathon every day.
“It’s the No. 1 genetic killer of infants and young children,” he said. “The National Institute of Health just declared that SMA is the disease closest to a cure of over 600 neurological disorders. So there’s some hope.”
During Blakely’s life, the Lewis family received support from the Gwendolyn Strong Foundation (GSF.org). The GSF has three iPhone and iPad apps that allow children with SMA to communicate, and calls it an augmentative alternative communication.
“These kids, they’re never able to talk, and they can’t eat on their own or even breathe on their own, but they’re very smart,” Elliot said. “So their iPad app helps them to be able to communicate.”
The GSF tries to provide support to SMA families and increase awareness. It also provides a lot of funding for research. It was founded by Bill and Victoria Strong, whose 6-year-old daughter, Gwendolyn, was diagnosed with Type I SMA at 6 months old.
Elliot said about 70 other families will run with them in the Santa Barbara International Marathon on Nov. 9. He and Janell will run the half marathon, and they’re trying to raise money to support that cause. The theme of the race is “We run so one day they can too.”
The overall goal of the families was to raise about $100,000. Elliot and Janell’s goal was to raise $6,000, and they have exceeded their goal with the support from family, friends and community members. Elliot said America First Credit Union and South Ogden City were especially supportive of his family. America First is doing a book drive for St. Anne’s Center on Wall Avenue called Books for Blakely. Anyone can donate new or gently used children’s books at any America First location to participate.
The Lewis family has set up the website www.running4blakely.com for anyone who would like to get involved with their cause.
“We want to increase awareness of this disease . . . We would rather get more people involved,” Elliot said. “I’ve always said we’d rather have 100 people donate $1 than one person donate $100.”
For families who have a child diagnosed with this disease, Elliot said, “One thing that’s been incredibly instrumental for us is support. You can get support from a number of organizations. There’s the Families of Spinal Muscular Atrophy; it’s a good organization that provides support. I would honestly, strongly recommend having some kind of a therapist to help you walk through and anticipate struggles. It’s the most difficult thing to lose a child, especially your only little girl. There’s literally no hope at this point. So I would just tell them to try and be resilient and seek some kind of support and be strong.
“Don’t take anything for granted. Always just cherish your children. You never know just how fragile life is.”