My son, Luke, was born 18 months ago with myelomeningocele, the most severe form of spina bifida. Luke and our family have faced many challenges: premature birth at 26 weeks due to complications after in utero surgery for spina bifida; a 171-day stay in the neonatal intensive care unit; 10 surgeries since birth; and more.
Throughout all this, Luke has been resilient. He has a loving personality and an infectious smile. He is now learning to walk. With all the medical challenges Luke has had to overcome, I never would have imagined that something so fundamental as finding shoes to fit over the braces he needs would pose such a challenge. But it has.
Luke’s form of spina bifida can cause significant issues with gross motor skills, like crawling, standing, sitting upright, and walking. Thanks to ankle-foot orthotic braces, which provide support for his ankles, Luke is pulling himself from sitting to a standing position while using furniture or a toy to stabilize himself. But the braces are bulky and finding shoes to fit over them has been an odyssey.
When I first took Luke to get his braces tailored, I asked the orthotist for a shoe recommendation. I remember the half smile she gave me when she replied, “Finding shoes that fit is not going to be easy. There are limited options.”
Keeping her response in mind, I took Luke shoe shopping after the appointment. I tried at least a half-dozen athletic brand-name shoes on him, only to find that most were not wide enough to fit over the braces. Those that were wide couldn’t be fastened because the braces stretched the shoe’s opening so much that the Velcro strips for fastening the shoes closed couldn’t meet. I left the shoe store feeling frustrated and defeated, though Luke didn’t seem to mind.
Soon after this shoe-shopping experience, one of Luke’s physical therapists told me that Nike had created the FlyEase, an adaptive, easy-access shoe that zips around the ankle. It was designed specifically for disabled athletes after the company heard from a teen with cerebral palsy who was struggling to gain independence. Various versions of the FlyEase shoe are now available to kids and adults of all athletic abilities.
Although I kept looking, I couldn’t find any other big-name athletic footwear company that offers an adaptive shoe tailored for kids with disabilities, especially none that are intentionally designed to fit easily around an ankle-foot orthotic brace. That didn’t make sense to me.
There are many children like Luke who wear these braces. In addition to those with spina bifida, kids with cerebral palsy, multiple sclerosis, muscular dystrophy, amyotrophic lateral sclerosis, and other conditions also use these braces.
I am certain that Luke, like any other kid wearing braces, will never be defined by the brand of shoes he is wearing. But all kids who struggle with mobility issues and their parents should be able to go to Shoe Carnival or other large shoe stores and find several options, just like their counterparts who don’t need braces. Kids wearing ankle-foot orthotic braces shouldn’t feel excluded because they are limited to a single type of athletic shoe purposely designed to fit around their braces — or can’t find any.
Shoes that fit over ankle-foot orthotic braces sound like a little thing. And in the big picture, they are. But it is important for children with disabilities to have access to shoes that fit them easily. They not only help improve their quality of life, but also allow them to simply be kids.
Given the number of children who use this kind of brace, it’s also a market opportunity.
The big athletic brands have the resources to develop footwear for children with disabilities, better enabling them to be a part of an inclusive lifestyle that other children enjoy. I challenge them to take a walk in Luke’s shoes and offer a solution to a very simple problem.
Cassi Young is a spina bifida advocate. This article originally appeared in STAT News.
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