LI girl speaks out after clinical trial for Spinal Muscular Atrophy cut by President Trump
LONG ISLAND (WABC) -- On Monday there are growing calls for leniency as many say the Department of Government Efficiency is going too far.
Doctors and researchers say the trimming is about much more than finances.
They say the cuts could be the difference between life and death when it comes to research and the advancements made in labs across the country.
On Long Island, those cuts hit close to home.
For 12-year-old Emma Larson who was diagnosed with Spinal Muscular Atrophy, getting into her wheelchair is now an easy feat.
But her mom Dianne Larson of Saint James says that was not always the case.
"Emma was diagnosed with spinal muscular atrophy at the age of one and a half, or SMA, and at the time there was no treatment there was no cure," Larson's mother said.
There was no treatment until Doctor Adrian Krainer with Cold Spring Harbor lab on Long Island led the way to creation of Spinraza, a first FDA-approved treatment for Spinal Muscular Atrophy.
Spinraza helps children regain their strength.
Emma at 1-years-old was struggling to crawl and hold her head up before falling over.
At nearly 3-years-old after just six months of a trial research treatment, she was crawling almost effortlessly after regaining her muscle strength.
"From then on it's just been miraculous. It was the first approved drug for SMA." Larson's mother said.
"I'm thankful that Dr. Krainer discovered it." Larson said.
Larson was among 100 child participants of Phase 3 of the clinical trial research that cost $16 million, which is now being cut by President Trump.
"It's kind of like mixed emotions. I'm angry and sad because I don't want children to go through that, no other other parents should have to go through that," Larson said.
Nearly two dozen states sued to block the National Institutes of Health's surprise slashing on billions of dollars in medical research around the country.
Senator Chuck Schumer is sounding off.
"Cold Spring Harbor, Stoney Brook, Hofstra, could all be hurt significantly from these cuts," Schumer said.
"It's just very important and holds a special place in our heart not just for Emma, but for all other children. Without it, we don't know where she would be." Larson's mother said.
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