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Local boy tries ‘miracle drug’ to reverse spinal muscular atrophy

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Windy Price and Eli Price

AMMON — A local spinal muscular atrophy survivor is trying a new “miracle drug” to reverse the effects of the disease.

Four-year-old Eli Price was diagnosed with SMA Type 1 at 12 weeks old. At the time of his diagnosis, he was in Germany and doctors were less than hopeful.

“When he was diagnosed the doctors told us to take him home, ‘Love him while you can … He won’t even make it a year,'” Eli’s mother, Windy Price of Ammon, said. “We’ve been fighting and learning. It’s so important to learn all you can about a child’s disability because you become the professional, you become the specialist.”

SMA is the leading genetic cause of death in infants. It affects nerve cells from the spinal cord to the muscles needed for basic motor skills.

“Because his body doesn’t tell the nerves to move the muscle, then his muscles atrophy,” Price said.

Eli’s body isn’t able to produce a vital protein needed for muscle movement. He isn’t able to sit up or walk and needs the help of machines to eat and breathe. Fortunately with the help of a new drug called Spinraza, the missing protein can be replicated.

“We lucked out. March 11, I believe it was. I was heading out of town sitting in the airport. My case manager … called and shared the information, and I’m crying in the airport, and I call my husband and he starts crying,” Price said.

Eli’s chances of a longer life and having muscle movement have drastically improved since receiving his first dose.

“Over time since his body is getting the right protein — now his nerves that haven’t died are able to start telling those muscles to move, and that will reverse the atrophy,” Price said.

The FDA officially approved this drug in December 2016. This is the first and only drug to treat the disease. Patients who took Spinraza achieved milestones such as sitting unassisted, standing, or walking when they otherwise wouldn’t have, according to the FDA.

The drug is administered as a lumbar puncture, or in the spinal cord area. The first three shots are administered two weeks apart. One month after the first the first three shots, it is then given every four months for the rest of the patient’s life.

The cost of the drug is at least $750,00 for the first year or $125,000 per injection. Every year after it comes to about $350,000. Through the help of a board of doctors, Eli’s insurance covers the expense.

Now that Eli’s on his second dose, Price said she’s already seen significant progress. Price said their family’s only hope for the drug was that it would stop the atrophy and allow Eli to be with them longer, but they’ve been pleasantly surprised.

“We’ve noticed a lot more definite leg movement. Now we’re noticing bigger movements. We’re noticing he’s a lot louder. We’re noticing his oxygen saturations are a lot higher and he’s able to come off his mask frequently, and so we’re hopeful,” Price said. “Who knows? Maybe sometime he can hold a toy on his own, or he can work a power chair easier.”

The Price family is currently looking for a nurse or LPN to help take care of Eli. Contact Windy Price at (385) 222-1231 for more information.

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