Minnesotans benefit from ‘robot legs’

Sep 19, 2023

On Sept. 16, four Minnesota children will put on their “robot legs,” all in an effort to build awareness around accessibility and inclusion while raising money so that another child can have the experience of walking on their own.

The Kourageous Karter Foundation will host the second annual fun run/walk, but this year closer to home in Hugo rather than in St. Paul.

“It just made sense to do it at Lions Park. It is the one playground that we go to frequently, we were involved in the design of the project, and it represents access and inclusion, which is the main point of the foundation that we created,” said Kourageous Karter founder Tiffany Goodchild. “We want to showcase the (inclusive) playground … it is one of the best ones.”

Goodchild, a Hugo resident, launched a nonprofit, the Kourageous Karter Foundation, back in 2020 right before the pandemic hit. The organization’s mission is to raise money for causes that directly affect families like hers as well as to offer them resources.

The foundation gets its name from her son Karter, who was born via an emergency caesarean section after his mother experienced a spontaneous fetal maternal hemorrhage. Karter suffered a massive hypoxic ischemic encephalopathy injury (HIE). At first, the family was told Karter wouldn’t survive, then it turned into “he might not live to see his first birthday” … and then, “You can probably make a five-year plan.”

Goodchild describes Karter, 7, as a “medically complex child.” As a result of the brain injury, he has cerebral palsy, epilepsy and a feeding tube; he is also nonverbal. One technology Goodchild and her family will be forever grateful for is the Trexo Robotics Gait Trainer or, more simply, “robot legs.” Karter was the first child in the state of Minnesota to get one back in January 2020.

A man from Canada created the robot legs for his nephew, who had cerebral palsy and was told he would never be able to walk. The family continues to see progress and many benefits from using the device.

Christopher Schlemmer, 10, of Forest Lake has had his robot legs for a year. Christopher’s mother, Melissa Schlemmer, explained that he has congenital disorder of glycosylation, also known as PMM2.

“When he was born, we were under the impression that he was typically healthy. We had no idea that he had this underlying condition,” she said. “It wasn’t until (he was) a few months old that we thought something wasn’t right.”

Christopher was not gaining weight the way he should have, and he had low muscle tone. At the age of 9 months old, a bunch of tests revealed he had PMM2. Christopher is more severely affected than many of his peers who have PMM2. He is nonverbal and struggles with gross motor skills.

Melissa is happy that she decided to make the investment in robot legs for Christopher, as she has seen some improvement. “The therapists have said using it on a consistent basis has improved his endurance; he is able to go longer hours in therapy and he is not as tired out. It has improved his trunk control/strength and his head control,” she said.

Mitchell Starken, 4, of Woodbury, had an in-utero stroke attributed to an extremely rare genetic disorder called Gould syndrome, which led to cerebral palsy. Among other diagnoses, he has epilepsy. He got his robot legs in December 2022.

Cole Carlson, 6, of Hastings, has a similar story to Karter in that he was not expected to survive when he was born. He suffered a brain injury at birth, resulting in HIE, cerebral palsy and a seizure disorder. He received his robot legs in October 2022.

Although some specialized clinics and hospitals have a set of robot legs, it is rare for children to have them at home and in their communities because they are expensive. Families can lease a set of robot legs for $1,000 a month. After three years, if the child is still experiencing benefits from the technology, they will own the device for $36,000.

Goodchild says some good news is that Minnesota’s medical assistance program is beginning to cover the technology with waivers; however, many families are forced to choose between robot legs or other necessities like home modifications or nursing staff.

The Kourageous Karter Foundation hopes to raise $25,000 this year, which will be used to provide a scholarship for at least one child. Last year’s event raised just over $20,000. Thirty-eight applicants applied for the scholarship, but the foundation was only able to fund one.

Although some children with robot legs may eventually be able to walk independently, many of them never will. “For Karter, that (walking independently) is not a reality,” Goodchild explained. “We use this technology because it allows him to get that experience and the medical benefits of walking.”

For more information on the event or the foundation, or to register for the event, visit https://kourageouskarter.org.

Managing Editor Shannon Granholm can be reached at 651-407-1227 or [email protected].

What: Second annual Kourageous Karter Fun Run

When: Saturday, Sept. 16. Kids’ run at 8:30 a.m.; 5K fun run at 9 a.m.

Where: Lions Volunteer Park, 5524 Upper 146th St. N., Hugo

Details: The second annual run will feature a kids’ fun run/walk, 5K fun run/walk, silent auction, face painting, food trucks, bubble station and more. To register, visit https://kourageouskarter.org/kkf-fun-run-2023.

Contact: [email protected]

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