Rylee Davis, almost 4, has a long lashes, a cascade of curls and blue eyes like her daddy’s. She lives with her family — father Aaron, big sister Ryann and mother Deborah — in West Virginia, not far from Marshall University, whose story of courage was profiled in the recent Matthew McConaughey movie “We Are Marshall.”
The Davis family is also a profile in courage, though they likely don’t think of themselves that way. Rylee was born with nonketotic hyperglycinemia (NKH), a rare genetic disorder (see sidebar) that typically causes seizures, respiratory difficulties, severe to profound mental retardation and very low muscle tone.
Rylee currently uses a Kid Kart inside her home and a Dreamer Design stroller, in a new, smaller size, when venturing outdoors. “She’s extremely hypotonic, so she’s just like a little limp noodle,” Deborah says. “She needs trunk and head control. She has to be completely supported in both of those areas, or she just collapses in on herself; she can’t breathe.”
Because of her experiences in raising a special needs child, Mobility Management asked Deborah what she wants and needs from pediatric mobility products.
Mobility must fit into the family’s active lifestyle.
Equipment must fit not just the child who’s using it, but the entire family.
“I want to be able to get out,” Deborah says. “When we had Rylee, we were 26 and 27, and we had a one-and-a-half year-old. We were already so bound by her disorder that just navigating the programs and her medical issues was such a daunting task. Rylee’s disorder is life-threatening; most children don’t even survive past utero.
“Rylee will be four in June. We love her, we accept her. That’s not our issue. But we want to live. We’re a young family. We go to baseball games, we go to the park, we go to the pool, we go to church. We do everything that a normal family would do. The only difference is we have to think first and foremost of Rylee’s safety, is she protected, is she structurally sound?
But also we decided early on with Rylee that we weren’t going to spend the rest of her life just waiting for her to die. We were going to enjoy her.”
Aesthetics are crucial.
It’s easy to rank a chair’s appearance far behind clinical benefits, but to parents, a mobility system’s looks are a much more personal and emotional issue. “She’s a little girl,” Deborah says. Why do you have to sacrifice aesthetic value to have your child safe? She is not defined by her diagnosis. She is defined by who she is to our family. We want to take her out; we want to enjoy showing her off, and we want a product that allows us to do that so she doesn’t look like a freak show.”
Deborah has strong words for wheelchair “aesthetic options” that run only skin deep. “’Oh, but let’s throw in polka dot material, because that looks like pediatrics,’” she says, mimicking, in a good-natured tone, what she’s heard before. “What the heck is that? Polka dots? I want pink camo; I live in West Virginia!”
She laughs, then gets serious. “I don’t really want pink camo. I want options. I want to pick and choose a headrest, and I have 10 to choose from as she grows. Or I can pick and choose lateral brackets, and I can pick and choose a basket and a canopy. Just because they’re special needs doesn’t mean they don’t deserve as much, if not more. Don’t make something that looks like we’re in the hospital! We’re not in the hospital! We’re living life!”
And it all needs to be in a practical package. Deborah can laugh now, but a hard-to-disassemble manual chair drove her to tears in the parking lot of local mall a couple of years ago.
“Here I am, eight and half months pregnant — there was no room in the inn, if you know what I mean,” Deborah says. “I have a Dodge Stratus (sedan). And I had a four-year-old (oldest daughter Ryann) who was running around: ‘Mom, come on, let’s go!’ I had to take this big piece of machinery out, put it together and half the time it wouldn’t fit together. I’m feeling like I’m going to give birth right here.”
Another important requirement: storage space. “There’s almost nowhere, on these mobility strollers for youngsters, once you put your child in it,” Deborah says. “Where the heck do you put the suction machine? The feeding pump? The diaper bag?
We still have all the same needs as a normal parent. We still have to haul around diapers and wipes and a change of clothes when they have a blowout. Or you’re tube-feeding them, and somehow the tube gets stuck on something and you have to pull off the tube and here comes the formula everywhere.”
Finally, the Davises needed overhead protection. “We wanted a canopy so Rylee was safe from germs and from overhead lights, because Rylee has seizures,” Deborah says.
A large canopy acts as a shield for Rylee and her family during feeding, diaper changes and when they just want privacy. “Quite frankly, when we go out sometimes, we don’t feel the need to educate the masses,” Deborah says. “We just want to go out. We wanted a product that looked aesthetically very similar to a regular stroller and not a special needs stroller.”
In the end, Deborah says, she wants everyone involved in the building of pediatric mobility equipment to keep creating, to strive for innovation, and to remember that special kids often require outside-the-box solutions. She also wants them to know that families with special needs children are families first.
Greg Allison of Dreamer Design, who customized a stroller for Rylee, says beyond the clinical benefits to be had from mobility systems, the entire family gains from being able to take their special needs kids out into the community. “One of our advertising models is a mother and son, and he’s autistic,” Allison says. “Trevor is 8 now, and he is a pretty good-sized kid. (His mother) had a difficult time controlling him, and she felt that this was something very beneficial to her, having the ability to strap him in. It allowed her a certain amount of control and freedom. They go to the park quite a bit, and he can feed the ducks from the stroller. She doesn’t have to worry about him jumping in.”
“There’s so many disorders, so many needs, and there’s so many families like us that are young and are having children that are very involved medically,” Deborah says. “Just because we have a special needs child doesn’t mean our life stops. It means we find a different ‘normal.’ But our life does not stop. As long as we have Rylee, we’re going to keep going and trying to make sure she makes a difference.”