Christmas wish-come-true for Glenwood Springs boy
Fundraising push to raise $35,250 needed to purchase a robotic walking device for sixth grader Turner Fautskowill give him increased independence
Once the winter chill lifts, and if all goes as planned, look for a familiar face striding around Glenwood Springs in full celebration of an extraordinary Christmas wish that just came true.
A recent fundraising push to raise $35,250 needed to purchase a robotic walking device, called a Trexo, for Glenwood Middle School sixth grader Turner Fautsko, was a success.
“It makes me cry, and it’s just overwhelming to see how much love and support our family has in the community,” Turner’s mom, Jenni Fautsko, said.
“When people see Turner the way we do and take the time to know who he is, it’s very special,” she said. “We’re so thankful.”
Turner, who turned 12 in October, is the son of Matt and Jenni Fautsko of Glenwood Springs.
He’s a bit of a celebrity among his peers, having attended Sopris Elementary School before graduating to middle school, and helping his classmates learn about the extremely rare genetic neurological condition that he lives with.
Turner has what’s called KAND, a KIF1A-associated neurological disorder that confines him to a wheelchair and causes spastic paraplegia, dystonia, developmental delays and scoliosis, plus numerous physical ailments that require routine surgeries. He’s also nonverbal.
There’s only one other case that Jenni said she’s aware of in Colorado, and just 350 documented cases in the entire world, she said.
Prior to a major spinal fusion surgery in October 2020, the Fautsko family had done a fundraising campaign to purchase a Galileo tilt table for Turner to use when out of his wheelchair.
However, the table manufacturer and the organization they worked with to raise the money to buy it, Bridging Bionics Foundation — started by Aspen resident Amanda Boxtel — decided it would not be safe for him to use after the surgery.
So that money was put toward the purchase of the Trexo, which, if all goes according to plan, should give Turner the mobility he needs as he grows to avoid future medical complications.
It will also allow him to interact with people more and generally improve his quality of life.
With some publicity help from Hannah Pfaff at Tri County Locksmith, the Fautskos were able to raise the additional funds needed to obtain the walking device.
“The sheer thought of Turner gaining more independence and confidence brings the biggest smiles to his parents’ faces,” Pfaff said. “Being able to finally purchase the Trexo will be life-changing for both Turner and his family.”
Jenni said they anticipate receiving the Trexo soon after the first of the year once it’s fitted with a custom gait trainer.
The device is equipped with a computer tablet. With assistance from his physical therapist, Turner will have to learn how to use the Trexo on his own, so that he can begin to take his first non-human-assisted steps.
“Turner has never taken steps unassisted, has never stood unassisted,” Jenni said, explaining that he can bear some weight with help and was able to take steps when he was younger using a harnessed device called an Upseat.
“He’s gotten too tall and too heavy for that,” she said. “What’s incredible about the robot is that it will learn Turner, and Turner will learn it.”
Eventually, if he takes to the device, the machine will do less work and Turner will do more himself to facilitate his own movement, she explained.
Once Turner is used to the device, Jenni said she hopes to organize a celebration demo where he can showcase his new mobility and walk down the street through a finish-line ribbon.
Research is ongoing to learn more about KAND and other Kif1A disorders, including at a research lab in Boulder called BioLoomics Inc.
“The research that’s being done is astounding,” Jenni said. “We have five or six biotech and scientific research companies working on treatment and/or a cure.”
The Fautskos are also working to eventually purchase a specially equipped Toyota Sienna minivan that will help with transporting Turner to and from his doctor’s appointments and procedures in Denver. It will need to include a special lift to get him in and out of the vehicle.
“Turner is the light of our lives, and we just want his life to be happy and full and the best that it can be,” Jenni said.