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One in a million

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Young Turner Fautsko was born and raised in Glenwood Springs. He dons a contagious smile anyone in his periphery is sure to catch. Already in his short time on earth, Turner has touched the hearts of many. He’s a typical kid who attends public school, likes country music and whose mom is convinced he was a drummer in his past life.

Atypical to Turner’s story is that he lives with a rare condition called KIF1A Associated Neurological Disorder (KAND), a genetic ailment he was born with (back in 2009) but only officially diagnosed with in 2017. Originally, “He had more of a global diagnosis of cerebral palsy,” explained Turner’s mother, Jen Fautsko, “until we got the actual exome sequencing done.”

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There are only about 400 documented KAND cases worldwide, and it is likely “severely” underdiagnosed, she added. On top of being a rarity, there are several variants, each with fluctuating degrees of implications. 

Remarkably, Turner has a friend a few years younger who also lives with KAND. Additionally, his family met the founder of KIF1A.org, whose daughter lives with the condition. 

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Until recently, Turner could only walk when fastened to his physical therapist with an Upsee body harness. Besides that, “He’s always used a wheelchair,” Jen said, rolling in his first at the age of three. 

Years ago, Jen jumped (literally) at the opportunity to meet Amanda Boxtel, the founder of Bridging Bionics, after noticing Boxtel out front of her photography studio in Basalt at the time. Since then, Turner has participated in physical therapy with the organization, which meets its mission daily “to provide access to affordable and ongoing physical therapy and advanced technology for all individuals with neurological mobility challenges.”

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About three years ago, Jen saw a video of someone using a Trexo, an upward mobility device that makes walking possible for someone like Turner — without having to be attached to another person. Despite there only being roughly 150 children equipped with a Trexo, Jen was determined to acquire one for her son.

Bridging Bionics facilitated a fundraising campaign for Turner and, sure enough, the community rallied. Before Jen knew it, what once was an elusive dream came within reach.

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The family couldn’t contain their gratitude. On Thursday, June 23, they held an “appreciation walk” where nearly 200 people walked over the Grand Avenue Bridge in Glenwood Springs, with Turner leading the way. “It was amazing. It was just so amazing; so much energy, joy and happiness    I’m still on a high from it,” Jen said.

With community by his side, Turner took the most steps he’s ever taken solo — 615, to be precise — and also broke his speed record at 45 steps per minute.

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While mom and dad need to help Turner into the Trexo, once he’s fastened he can explore his surroundings like never before. “He loves it. He absolutely loves it,” Jen said endearingly. 

“We are so, so grateful.”

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Tags: #Bridging Bionics #KAND #KIF1A Associated Neurological Disorder #Trexo #Turner Fautsko
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