A Christmas wish come true for a boy in Glenwood Springs
Once the winter chill has lifted, and if all goes as planned, look for a familiar face that roams Glenwood Springs in the midst of celebrating an extraordinary Christmas wish that has just come true.
A recent fundraising campaign to raise $ 35,250 needed to purchase a robotic walking device, called Trexo, for Turner Fautsko, a sixth-grade student at Glenwood Middle School, was successful.
“It makes me cry and it’s just overwhelming to see how much love and support our family has in the community,” said Turner’s mother Jenni Fautsko.
“When people see Turner the way we do and take the time to find out who he is, it’s very special,” she said. “We are so grateful. “
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 Primary School before graduating from high school, and helping his classmates to learn about the extremely rare genetic neurological disease he lives with.
Turner has what’s called KAND, a neurological disorder associated with KIF1A which confines him to a wheelchair and causes spastic paraplegia, dystonia, developmental delays and scoliosis, as well as many physical conditions that require routine surgeries. It is also non-verbal.
There is only one other case Jenni said she was aware of in Colorado, and only 350 documented cases worldwide, she said.
Prior to major spinal fusion surgery in October 2020, the Fautsko family had led a fundraising campaign to purchase a Galileo tilting table for Turner to use when not in a wheelchair.
However, the maker of the table and the organization they worked with to raise funds for its purchase, Bridging Bionics Foundation – started by Amanda Boxtel, Aspen resident – decided that it would not be safe for him to use it after the surgery.
So that money was spent on purchasing the Trexo, which, if all goes as planned, should give Turner the mobility he needs as he grows to avoid future medical complications.
It will also allow her to interact more with people and generally improve her quality of life.
Thanks to publicity assistance from Hannah Pfaff of Tri County Locksmith, the Fautskos were able to raise the additional funds needed to obtain the walking device.
“The mere thought of Turner gaining more independence and self-confidence brings the biggest smiles on his parents’ faces,” Pfaff said. “Being able to finally buy the Trexo will change the lives of Turner and his family. “
Jenni said they plan to receive the Trexo soon after the first one of the year, once it is fitted with a personalized walking trainer.
The device is equipped with a computer tablet. With the help of his physiotherapist, Turner will have to learn to use the Trexo on his own, so that he can start taking his first steps without human assistance.
“Turner never took action without help, never stood without help,” Jenni said, explaining that he could take some weight with help and was able to take measures when he was younger using a harness device called an Upseat.
“It got too big and too heavy for that,” she said. “The amazing thing about the robot is that it will learn Turner, and Turner will learn that. “
Eventually, if he uses the device, the machine will do less work and Turner will do more himself to facilitate his own movements, she explained.
Once Turner gets used to the device, Jenni said she hopes to host a celebratory demo where he can showcase his new mobility and walk the streets through an arrival 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 is being done is astounding,” Jenni said. “We have five or six biotechnology and scientific research companies working on a treatment and / or a cure. “
The Fautskos are also working to eventually purchase a specially equipped Toyota Sienna van that will help transport Turner to and from his doctor’s appointments and procedures in Denver. It will have to include a special elevator to bring it in and out of the vehicle.
“Turner is the light of our lives, and we just want her life to be happy and full and the best that it can be,” Jenni said.