When Hunter Davis was eight weeks old, doctors told his parents to enjoy the time they would have left with him after diagnosing him with spinal muscular atrophy.
“At that time, they told us to expect three to six months, as Hunter was so weak,” Khrystal Davis, his mother, said.
Spinal muscular atrophy is a genetic disease that affects around one in 11,000 babies, according to the organization Cure SMA. It affects motor nerve cells in the spinal cord.
“It’s like ALS in babies,” Davis said. “It robs the ability to move, to swallow and ultimately breathe.”
Davis said after hearing the news from her doctors, she and her husband started doing research and were able to connect with researchers. That was the key to keeping Hunter alive, she said.
“A researcher actually provided us a chemistry for a compound,” she said. “We found a company who manufactured the compound. We took that to Mexico and eight weeks after he was diagnosed, Hunter received his first life-saving treatment.”
Hunter is now six years old and for the last five years, their family would travel to Mexico for treatment every six weeks. Davis said they paid for the treatment and travel out of pocket and it added up to around $1 million.
In December 2016, the U.S. Food and Drug Administration approved Spinraza, the first drug to treat children and adults with the rare disorder. Hunter now uses it. Coverage for Spinraza varies for state to state and doctors say estimated treatment costs are $750,000 for the first year and $350,000 for subsequent years.
Davis is hoping the state will add spinal muscular atrophy onto the list of conditions screened in newborns in Texas. Right now, newborns are screened for 53 conditions.
The Newborn Screening Advisory Committee, which advises the Texas Department of State Health Services, discussed the issue in-depth Friday during a meeting Davis attended. They are considering whether to recommend the state add the condition onto the list of what newborns are screened for, while they monitor if it will be added to the federal Recommended Uniform Screening Panel. Davis hopes it happens.
“I don’t want another parent to be told, ‘there’s no hope for your child,’” she said. “And in order to achieve that, we must add spinal muscular atrophy to the newborn screening panel throughout the United States and especially here in Texas.”
If the disorder is added onto the newborn screening panel, it’s up to state lawmakers to set aside funding for equipment and setup, according to a spokesperson for the Texas Department of State Health Services.