Nick and Kylie McElroy just want their son, Parker — soon to turn 4 and born with “global delays” that don’t allow him to talk, eat, stand or walk — to have fun.
“Just for him to have the ability to do some of the same things as his little sister,” Nick McElroy said. Parker’s sister, Hadley, will turn 2 next week.
On Saturday morning at Legoland in Crown Center, Parker was one of dozens of special-needs children who lined up to move and play in ways they typically do not, at least not with ease.
Parker was picked up and placed inside a GoBabyGo harness system that physical therapists at Rockhurst University and elsewhere are now assessing. They hope that it or similar systems might one day soon bring greater freedom of movement and play to special-needs children.
“If you’ve never seen your child stand or move, it’s pretty emotional” to see them do so, said Deb Wiebrecht, executive director of Variety KC, a local charity serving developmentally disabled children.
Variety KC purchased the $4,000 harness late last year to get a sense of how useful it might be for area special-needs children. The nonprofit debuted it publicly Saturday with the eventual goal of raising interest and funds to possibly buy more.
“The harness system is truly created for inclusion,” Wiebrecht said. “It is for kids who are usually nonmobile to move amongst other children.”
Which is how it worked for Parker. Once secured into the harness, supporting his weight, he bounced, moved and played on his own.
“He’s never been in anything like this,” Parker’s dad said. “He has a swing. That’s about all he can do outside. We have a patio at home. I can see setting this up out there. This would be amazing.”
The system is simple enough. It’s portable and essentially uses the framework of the industrial version of a 10-foot-by-10-foot aluminum tailgate tent. A harness seat dangles from elastic cords that are secured above to an aluminum track. The harness supports a child’s weight, limited to about 50 pounds, while also allowing the child to move back and forth along the track and have fun.
“In some ways, it’s not the harness itself that is important, but what’s under it,” said Kendra Gagnon, a professor of physical therapy at Rockhurst University now working with the device.
The GoBabyGo harness system comes out of the University of Delaware and the laboratory of Cole Galloway, chairman of the university’s department of physical therapy.
Similar harnesses already exist, Galloway said in an interview this month, but they most often are used only in therapy or rehabilitation centers where children may access them for, at most, a few hours each week. Often they’re set up above a treadmill to allow children to exercise.
A standing belief among physical therapists is that allowing children to have greater mobility stimulates the nerves of the body and brain to accelerate physical and cognitive development. The more kids move, the better they do in all aspects of development.
As such, Galloway’s lab developed the GoBabyGo harness, now produced by a company called Enliten LLC out of Newark, Del., to be portable for children and families to use at home.
“A typical developing toddler spends eight to 10 hours a day active and physically mobile with their peers,” Galloway said.
Children with special needs, meanwhile, may spend as little as an hour each day active and not without the help of an aide or parent, he said. A portable harness alters that.
“The child, over minutes to hours, figures out — even if they haven’t moved by themselves — that ‘this thing helps me stay safe and I can start to jump and run and start to catch up with peers,’ ” Galloway said.
Amanda McCarter, 22, of Lee’s Summit, brought her 22-month-old son, Dale, born with cerebral palsy. He can stand but so far is unable to walk.
“It’ll give him the ability to jump or bounce. He’ll like that,” she said.
The portable harness seemed so useful for children that, in 2014, the Delaware lab also developed a larger harness system for adults with special needs. As shown in a YouTube video, the university runs a GoBabyGo Café on campus where an adult with a brain injury that typically does not allow her to walk on her own uses the harness to move freely and work behind the coffee bar.
Regarding the pediatric harness, Gagnon of Rockhurst said the next step is to conduct a 12-week study at the Children’s Center for the Visually Impaired in Kansas City to get a sense of how well children actually do with the device.
“Do they like it?” Gagnon said. “Do they use it? Do they get good outcomes?”
It won’t be the first time Gagnon and the children’s center have worked together.
The GoBabyGo name is perhaps best known, even locally, as a program that is growing nationwide. It takes $100 motorized plastic cars and, using inexpensive parts, refits them with buttons or other controls so that children with special needs can move about on their own without the use of a motorized wheelchair costing $10,000 and more.
In April 2015, The Star wrote about the GoBabyGoKC modified car program, started by Gagnon, which aided children at the Children’s Center for the Visually Impaired. At that time, physical therapists and Rockhurst engineering students had refit only a few cars. Soon after, Variety KC opted to sponsor the GoBabyGoKC program with $10,000, allowing the group so far to build an additional 60 cars for special-needs children in the area.
Parker got one of the cars three months ago.
“He absolutely loves it,” Nick McElroy said. “The harness system, though, is a whole different ballgame. The car allows him to be mobile out in public.
“But at home, the only thing he can do outside is swing. So the harness system would be something he could use to fully function outside, play in the swimming pool with his sister, to run around the patio, play with a ball, any number of things he can’t do right now.”