WESTFIELD, Ind. -- A Westfield mother is advocating for a change in state law to give children like her son the best chance at survival.
Adrienne Vollmer is asking the state to include a rare, but deadly, genetic disorder in newborn screenings.
Doctors diagnosed her son Graham with spinal muscular atrophy when he was 2-months-old.
"Anything you had ever imagined for your child or his future, or of your family of 5, and how it's going to be, or what vacations you're going to take, and what schools he's going to go to or who his friends are going to be, all of that is suddenly just wiped away,” Vollmer said.
Doctors told Vollmer that Graham likely wouldn’t make it to the age of 2. An estimated 90 percent of the babies diagnosed with SMA don’t even make it to the age of 1.
The disease means Graham can’t breathe, swallow, crawl or walk without help. There’s no cure. But, in the two years since Graham’s diagnosis, the FDA has approved a treatment for SMA.
That’s pushing Vollmer to try to change state law. She’s working with Rep. Douglas Gutwein to introduce a bill to include SMA in newborn screenings.
"It's more important than ever that as a newborn, babies are diagnosed with SMA so that they can begin treatment pre-symptomatically before they start to lose their ability to walk or swallow or breathe,” Vollmer said.
Hospitals in Indiana currently screen newborns for 47 different conditions. The cost of newborn screening varies from state to state, ranging from $15 - $150. In Indiana, the test costs $85.
The Indiana State Department of Health says the conditions on the newborn screening panel are based upon recommendation from the national Health & Human Services Committee. The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) maintains a recommended universal screening panel (RUSP).
When new conditions are added to the RUSP, ISDH works with the healthcare community to ensure that it has the ability to perform the required tests and provide follow-up care for impacted families. This includes the initial screen, confirmatory tests, treatment plans, as well as wraparound services and community resources for patient support. Additions to the panel can be made either legislatively or through ISDH’s rulemaking process.
The Cure SMA research organization estimates eight babies are born each year in Indiana with the condition.
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