A Lonedell toddler will be getting a device specially designed to help him with his mobility.
Jaxon Gann, 2 1/2, was born with spastic quadriplegic cerebral palsy. With his condition, playing with ordinary toys have been difficult for him, according to his mother Courtney Lewis.
Marena Lewis, his grandmother, had bought Jaxon a toy truck for his birthday for him to move around in. She thought by then his muscles would be strong enough for him to use the truck.
“When we got him the truck, we realized the seat was so slick and so wide. He was sliding forward or sliding to the side. He really had a hard time in it,” Marena said.
Through Jaxon’s doctors in St. Louis, Courtney was given information and paperwork for an electronic car that would be specifically designed for Jaxon.
The program is called Go Baby Go. It was started in 2012 by a physical therapist at the University of Delaware. After research, the Lewis family found a Go Baby Go chapter located at the University of Missouri-Columbia.
The family has been working with Dr. Willam Janes, an assistant professor at Mizzou and occupational therapy doctor, in creating a car, or in this case a special truck, for Jaxon.
Janes told The Missourian that the program was founded by a physical therapist who noticed that there are no affordable powered wheel chairs for young children.
“We know there are all kinds of benefits to young kids gaining mobility at that developmentally appropriate age,” Janes said.
Jaxon’s truck is being customized to fit his size and needs by a team at Mizzou, Courtney said. The truck was taken to Mizzou’s campus earlier this summer and the family met with Dr. Janes. The renovations to the truck will be finished soon.
With having the truck, Courtney said Jaxon “will be able to freely play like a normal little boy. He wants to get up and go and it’s frustrating for him whenever he can’t accomplish something, she said.
In addition to his regular therapy, the truck will be another way for Jaxon to strengthen his core and muscles in a fun way, according to Courtney and Marena.
The Mizzou Chapter
Mizzou has had a chapter of Go Baby Go for three years and Janes has been working in the program for the past two years. The university is one of two active chapters in the state, according to Janes.
The chapter is made up of faculty and students with different disciplines, including occupational therapy, physical therapy, electrical and computer engineering, mechanical engineering and bio engineering — all working together to develop the cars.
All cars are customized to each child’s physical and cognitive needs, Janes said.
Mizzou’s chapter is about more than just designing cars.
“The other thing that’s special about the program here at Mizzou is it’s really a research program for us,” Janes said. “We collect a lot of data on kids that get Go Baby Go cars here to try and figure if they’re actually benefiting.
“There are a ton of studies out there that say Go Baby Go is good for kids’ physical, and, cognitive and social development, those studies are all really small, which means it’s harder for us to rely on those results,” he added. “So we’re trying to collect more and more data to really make sure that it’s having the positive impacts we think it is.”
In addition to the car, the child also receives follow-up visits to see how they’re doing long-term and to check that all the parts on the car or truck are working.
“Anything that does go wrong, we’re there to fix the car and to make sure the kid gets what they need out of it,” he said.
About 40 cars have been designed and given to children in the last three years. If a child is currently being seen by a University of Missouri health care provider, an occupational therapist or a physical therapist, then they can be enrolled in the program.
Janes said the materials and everything needed for the car are free of charge. If a family comes from out of town, the child is not eligible to participate in the study, but if the parents or guardians provide the car and parts, the team at Mizzou can put it together for free.
“It’s an educational and service opportunity for our students,” Janis said. “I work and guide the students and we make the modifications and then take it to the family.”
The program at Mizzou has been funded by a nonprofit called Pascale’s Pals and from the University of Missouri Research Council.
As children grow out of their cars, the teams at Mizzou can either modify them to make them bigger and repurpose them for another child in need.
Over the past two years, Janes said the research and development team has grown.
“We’re finding out that there are more and more people both here at Mizzou and across the state who are interested in doing this,” he said. “That’s been really heartwarming. It means we have more resources in terms of the people to do the work and contribute to the work.
“It also means we’re casting a wider and wider net,” he added. “We have people like the Lewis family find us.”
Janis said it’s a “If you build it, they will come” circumstance.
The other Go Baby Go chapter in Missouri is at Variety KC located in Kansas City. Janes said members from the Kansas City chapter helped start Mizzou’s program.
Go Baby Go is a national program. Janes added that he went to Creighton University in Nebraska to help start its program and participated in a build of cars in Salt Lake City, Utah.
For more information, visit healthprofessions.missouri.edu/community-services/go-baby-go or facebook.com/mizzougobabygo. Janes can be reached at firstname.lastname@example.org.