It’s called Spinal Muscular Atrophy Type 1 and it has become the “new normal” for the Kingsley family.
Scott and Allison Kingsley’s youngest son Brett was diagnosed with SMA-1, a disease that affects voluntary muscle movement, when he was 7 months old. He just turned 6 in March and continues to beat the odds, thanks to a family-based system of care and what his mother calls their “circle of hope.”
It’s a circle that starts with Brett or “Prince Brett,” as Nationwide Children’s Hospital social worker Lori McCullough and other staff members there have dubbed him. He’s a blond-haired boy with dark eyes that move constantly, taking in everything around him, and elegantly long fingers that dance across the controls of the DynaVox, a speech-generating device, that talks for him.
The next ring of the circle is populated by his immediate family. Allison is the mom. You could call her a homemaker, but to do so you’d have to expand your definition of “home” to include most of the 614 area code. When she isn’t overseeing much of Brett’s therapies, doctors’ visits and all three of her children’s schooling in the Hilliard district, she’s giving speeches to new employees at Nationwide Children’s Hospital as part of their Family Advisory Council’s “Family as Faculty” program. And, of course, she’s also getting everyone else in the family fed, clothed and off to school, work or church each day.
Scott is Brett’s dad. He works in accounting for Butler Schein Animal Health, a veterinary supply company in Dublin, plus he’s training to become a deacon at First Community Church, a group that also plays a critical role in the Kingsleys’ circle of hope. Scott freely admits he’s a softie when Brett hits him up for a summertime soak in the wading pool or a trip to the barber.
Paige, 9, is Brett’s big sister and Ethan, 7, is his big brother. They have probably acquired enough medical knowledge and healthcare skills to ace an MCAT entrance exam for medical school.
“Ethan comes up with the crazy ideas to get Brett to stretch,” Allison explained proudly. And the dynamic little duo were able to pop Brett’s breathing tube in last summer when a team of adult health professionals at their church’s camp couldn’t figure out what was making a strange noise.
The church family plays a huge role with the family’s support system.
“We’ve surrounded ourselves with people like us,” Allison said. These, she added, are people who “truly see the child in Brett and not the diagnosis.”
Likewise the health professionals who weave in and out of their daily life play a critical role in maintaining the quality of the entire family’s lives.
Are the Kingsleys hoping for a cure? Yes, they readily admit they are and, in fact, science does edge closer each day to finding one because of the advancements being made in gene-replacement therapy. And the Kingsleys point out that it’s now considered common knowledge within the scientific community that curing SMA-1 will quickly open the door to cures and treatments for diseases like Amyotrophic lateral sclerosis (or Lou Gehrig’s Disease) and other forms of muscular dystrophy.
“It’s one of the most curable diseases, but it’s also one of the least funded,” Allison told the new employees at Nationwide Children’s Hospital when she addressed them in March. But the Kingsleys’ belief in finding a cure was the driving force behind their decision to create a home-centered system of care for Brett.
“We chose against hospice care,” Allison said, “because we knew we couldn’t forgive ourselves if a cure was found.”
So, when Brett was a little less than a year old, they chose for him to receive a tracheotomy that would enable him to keep breathing.
And then they brought him home.
For more information about SMA-1 and other types of muscular dystrophy, visit the Muscular Dystrophy Association’s website at www.mda.org
Story by Jane Hawes, Video produced by Alysia Burton