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Spinal muscular atrophy early detection bill introduced in Nebraska legislature

Posted at 1:00 PM, Jan 31, 2020

OMAHA, Neb. (KMTV) — A newly introduced Nebraska legislative bill aims to add spinal muscular atrophy, or SMA, to the list of screenings for all Nebraska newborns.

3 News Now Reporter Ruta Ulcinaite had the chance to meet a brave boy who has it and talk about why early screening is so important.

At physical therapy, Ollie Perry is focused as he trains harder than ever to strengthen his body.

"I barely notice I have them on," he says about braces that keep his ankles straight.

When asked why his physical therapy sessions are important, Perry says, "So my legs stay the same and don't get weaker."

Most 7-year-olds don't have to worry about their legs getting weaker.

Going to a bounce house birthday party is something many parents and children get excited about.

His mother says, "That's like my nightmare. How do you tell your kid, he can't?"

Ollie suffers from spinal muscular atrophy type 2 (SMA2).

Children's Hospital Interim Division Chief of Pediatric Neurology Dr. Geetanjali Rathore says "I tell most people, think about spinal muscular atrophy as the ALS in children."

In some SMA2 cases, it's hard for patients to eat, sit or even breath on their own. Ollie can do all of that even though doctors have told him he'll never be able to walk again. His lungs and legs are getting stronger every day.

For newborns, a new gen replacement shows promising results. It's being looked at as a cure. As of right now in Nebraska, SMA is not part of the newborn screening process but that's because previously, there was no cure.

"We can take care of it so that they can live a normal life and they'll never even know that they had the SMA to begin with," says Nebraska State Senator Robert Hilkemann.

Hilkemann introduced a bill last week that would add SMA to the newborn screening panel along with the other 32 other conditions newborns are tested for.

"We cannot waste a single day if you have a diagnosis. Early diagnosis and early treatment, it's very critical for these patients," says Dr. Rathore.

It would mean kids like Ollie would have the chance to walk and play. Even though early detection would only benefit newborns, Ollie is never giving up in his fight to be stronger.

"If you don't think you can do it, try it anyway," he says. "It's always better to try it than never do it."

The bill still has to go through the legislative process but if it passes, spinal muscular atrophy could be added to the list of screenings by July of this year.