Special bike lets 6-year-old with unique muscle disorder feel like a kid

Chad Smith has seen his 6-year-old son Blake go through "a living hell."

Blake suffers from a severe, undiagnosed muscle disorder that causes him to be nonverbal and triggers breathing problems and low muscle tone. He cannot walk without orthotic braces, and his condition remains undiagnosed. It has been difficult for Blake to receive the proper treatment for his ailments.

In an effort to create a newfound freedom for Blake, a Lone Mountain-area resident, he became ATI Foundation's first beneficiary in Nevada to receive an adaptive bike.

"Our mission is to provide medical resources and financial assistance for children with the goal to enhance and sustain a better quality of life," said Terry Williams, director of the foundation. "Blake is a great kid, and his family have gone through trials and tribulations, and they have come a long way. An adaptive bike will allow him to do something he's never been able to do before."

Founded in 2003, the ATI Foundation was created as a way for ATI Physical Therapy employees and patients to give back to the community. ATI expanded into Las Vegas earlier this year when Matt Smith Physical Therapy joined the company.

Blake received a bicycle that retails for approximately $2,400.

"I got goose bumps when I first watched Blake ride his bike," said his mother, Becky Smith. "He has to be careful when he walks, but when he's on his bike, he moves really fast. He gets to feel like the other kids."

For the past five years, Blake and his family have endured numerous doctor's visits and tests in the hopes of finding a diagnosis for his symptoms.

When Blake was about 8 months old, his family learned that he had bilateral vocal cord paralysis. Since that time, his condition has morphed into a maze of medical challenges.

By the time Blake was 3 years old, he also was living with being tracheostomy dependent, ventilator dependent, with atelectasis (collapsed lung), chronic respiratory failure, oropharyngeal dysphagia (difficulty swallowing), gastroesophageal reflux disease, hypotonia (low muscle tone), sialorrhea (excessive production of saliva), type 1-A minor laryngeal cleft, aerophagia (frequent swallowing of air), and a minor gastric ulcer, according to his father.

His family knows of 13 different issues with no answers.

"I watched my kid die on the bed once," Chad said. "I just want one of three answers. I want to know whether my son will get worse, better, or if what we have is what we're going to have to deal with."

Becky said that Blake experiences many daily challenges.

"Walking can become exhausting to him," Becky said. "He also has to eat through tubes and use a ventilator at night to breathe oxygen. But if you met him, you'd see he's the cutest, most precious thing."

To date, the ATI Foundation has sponsored 33 bicycles through Preston's March for Energy, a nonprofit that provides adaptive bicycles to children with disabilities. Blake was chosen as a result of a collaborative effort between the two nonprofits and a local organization that knew of his need.

Anyone younger than 18 who is physically impaired can apply to receive help from the foundation.

"Blake is the sweetest boy," Chad said. "He's affected a lot of people in a lot of different ways. We're so thankful that he received this bike. It's an extensive freedom seeing him ride with his sister."

Call Williams at 630-296-2222, ext. 7900, or visit atipt.com/ati-foundation.

— To reach North View reporter Sandy Lopez, email slopez@viewnews.com or call 702-383-4686. Find her on Twitter: @JournalismSandy.