PORTLAND, Ore. (KOIN) – A local family is desperately looking to help their son after he was diagnosed with a form of muscular dystrophy that requires a type of gene therapy that will set the family back millions of dollars that they don’t have.
The family told KOIN 6 they are running out of options as they face the challenge of affording Nolan’s treatment.
Less than a year ago, Dontae Gardner began noticing something wasn’t right for his child, Nolan.
“Early on, when he was 5 years old, I noticed he was struggling with a lot of things like going up the stairs in particular,” Dontae said.
After months of physical therapy and testing, Nolan was diagnosed with Duchenne Muscular Dystrophy in July. This means his muscles will start breaking down and he might have to rely on a wheelchair by the time he reaches 9 years old.
“The only option they had was taking steroids to keep him kind of on that same plateau for as long as possible, but there’s no cure for it,” Dontae said.
Nolan’s mother, Michaela Spencer, said the disease affects Nolan’s daily life.
“He’s tired a lot more easily,” she said. “He wasn’t able to do the same things he would do before. He can run, but not for very long. He can walk very well up the stairs still. Just basic life stuff, it’s just getting tougher.”
That’s why his family was excited about a new gene therapy approved by the FDA that helps produce a gene that Nolan doesn’t have – but it costs $3.2 million dollars.
His family tells me he was denied his dad’s insurance because the specific plan under the union he works for doesn’t cover gene therapy, and he has run out of appeals.
“He really has no option other than try to raise the funds to pay for it outright,” Dontae said.
And Nolan’s family said it’s not just about the money; it’s also a matter of timing. The FDA only approved the drug for children up to age 5. Nolan’s birthday is coming in less than a week when he will be 6.
“He has the kindest soul, smart, driven, and motivated. He’s always wanting to learn and play,” Michaela said. “That’s the toughest part about this diagnosis: The stuff he loves to do eventually he won’t be able to do. It’s heartbreaking, because that’s all he wants to do.”
His grandmother, Kelly Hobbs, comes to visit a few times a year from Idaho. She said she wants him to have a fighting chance.
“I can’t see him that way, not when there’s something to help him and it was about money,” Hobbs said. “That’s what angers me.”
To donate to the family’s GoFundMe, click here.