HUEYTOWN, Ala. (WIAT) — The life-saving drug Spinraza was approved by the FDA in December 2016. It’s a drug that many called a game changer in the fight against Spinal Muscular Atrophy, which previously had no treatment, but since the drug was approved, the fight against the disease has become an even bigger battle.
Breathing through a cough-assist machine–among many others–is the daily reality for 6-year-old Noah Hyche.
A smile and silly personality give him strength when his muscles, because Noah has the genetic disorder Spinal Muscular Atrophy.
“That causes progressive muscle weakness, it effects all the voluntary muscles, so breathing, talking, walking, crawling–and like I said, it’s progressive, so it continually gets worse,” Noah’s mother Lauren Hyche explained.
They thought things could finally get better after the FDA approved Spinraza last December–the first treatment ever for SMA. In fact, the Hyche family thought it was a miracle for their son, but so far, it has turned out to be completely inaccessible.
“It’s just been road block after road block, we saw his neurologist–it was about two weeks after Spinraza was approved, and we were told it would be about 6-8 weeks before he’d be able to have access to it,” said Hyche. “So when we heard that, we were lik, okay we’ll give it time, we’re not going to, we’re just going to wait it out.”
Four months later, they are still waiting.
“It hurts. At this point, I’m almost kind of numb because the emotional aspect is has been so draining, trying to get treatment for him, because it’s like it’s dangling in front us, but we cannot get our hands on it,” she said.
CBS42 reached out to Children’s of Alabama as well as UAB Medical Center to see exactly what the hold up was for families seeking the treatment; we are still waiting on a response.
However, CBS42 News will continue to follow the Hyche family as they search for the treatment to save their son’s life.