NJ Mom Pushes Lawmakers To Pass Bill To Screen Infants For Rare Disorder

Sean Adams
September 09, 2019 - 1:20 pm
New Jersey State Capitol Building

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TRENTON (WCBS 880) — A New Jersey mom is pushing lawmakers to approve a bill that would require newborns to be screened for a rare disorder that her 19-month-old son was diagnosed with.

Regina Phillips, of Haddon Heights, is waiting on a miracle. Her son Shane was diagnoses with spinal muscular atrophy shortly after he was born, meaning his body does not produce a protein that’s needed to support motor neurons.

“So as the neurons die from the lack of protein, the muscles begin to atrophy,” she tells WCBS 880’s Sean Adams.

Phillips said there is hope for her son thanks to a brand new form of gene therapy, which he received on July 9.

“It's called zolgensma – it's the most expensive drug in the world at $2.1 million,” she said.

His muscles are showing signs of recovery thanks to his therapy, but Phillips wants to ensure no parents has to go through what she has had to endure.

She wants lawmakers to help all other future generations that might develop the rare disorder.

“Once the signs already appear the treatment isn't nearly as effective as it is pre-symptomatically. So that's why I'm fighting for newborn screening, so that we can get every kid a fair chance at living a normal life or at very least a greatly improved life,” she said.

The screening bill has been approved by New Jersey’s state assembly and is up for a vote in the Senate.