For Noah Whitaker, video games are more than just recreation. They’re therapy – and a chance to experience life uninhibited by disease.
Noah, 11, has spinal muscular atrophy, a genetic neuromuscular disease that affects muscle strength and movement. The disease has limited Noah’s mobility to the extent that he can mostly only use his fingers and hands.
There are three main types of spinal muscular atrophy: Those with Type 3 are typically able to walk and are often diagnosed at age 1. Those with Type 2, like Noah, cannot walk or stand and often develop scoliosis and respiratory problems.
Children with Type 1 often do not live past two years.
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Noah’s caregiver, Kevin Duran, said Noah was initially thought to have Type 3.
“(Noah) was able to stand when he was born, and then it just deteriorated from there,” Duran said. “He was finally diagnosed with Type 2, where they never walk, they’re confined to a wheelchair.”
In July, Noah had surgery to help correct his scoliosis and relieve pressure on his internal organs. Two rods were inserted along his spine to straighten it, helping him sit up in his wheelchair and reducing his difficulty breathing.
Noah got his first wheelchair when he about age 2. As he began to grow, his parents, Scott and Frankie Whitaker, realized the family home wasn’t big enough to accommodate him. So they moved into Scott’s father’s home, where Noah’s mom acted as his primary caregiver.
But in 2016, after enduring breast cancer and a full mastectomy, Frankie died from pancreatic cancer. Noah’s aunt, Keri, became his second caregiver.
“You ever hear that old saying, ‘It takes a village?’ This is it. You do what you’ve got to do,” Duran said.
Scott’s job as a mechanical service operator for Union Pacific keeps him away from home during much of the week, leaving Noah’s daily care to Duran. But Sundays are dedicated to spending time with Noah.
With Noah’s limited mobility, there weren’t a lot of activities he could participate in. It was Scott Whitaker who first recognized the potential of video games. Noah, who could play using just his thumbs, could have common ground with his classmates. Working his muscles to handle a controller would also provide valuable therapeutic potential.
Scott purchased a Nintendo Wii for Noah.
“I was thinking, ‘Wow, that’s perfect, you’re killing two birds with one stone.’ He’s playing games and he’s doing some therapy, working his arms and his muscles,” Scott Whitaker said.
Most of the games required a range of motion beyond Noah’s ability, so the family made the switch to PlayStation 4.
Noah has been hooked on video games ever since.
Scott said that the daily use of his hands has increased the dexterity of Noah’s fingers and hands and kept him mentally engaged.
A Union Pacific Club employee has asked Book of Dreams readers to help purchase video games and clothes for Noah, who attends Warren T. Eich Middle School in Roseville.
“He’ll play games for four or five hours, the whole time working his arms and not realizing it. It’s therapy,” Scott Whitaker said.
But for Noah, games provide an opportunity to experience a life without limitations.
“I can have more ability to move around and do different stuff I can’t really do in the real world. It gives me more abilities to play with,” Noah said.
Noah’s appetite for games is insatiable. By Duran’s estimate, Noah beats most games within a couple weeks. Then he’s off to find the next challenge.
But Noah knows that new games aren’t always in the budget.
“With my mom now passed, we don’t make as much money, so I can’t get that many games,” Noah said.
So Noah waits months for his next game, keeping a mental list of his top picks.
As Noah gets older, his love for games is beginning to translate into a career path. Video game designer is chief among his list of dream jobs.
“It’s not like he’s going to go out and ride bicycles with kids and play ball. That’s all he’s got. And that’s going to be his future,” Scott said.
Needed: PlayStation 4 games and warm clothing