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12-year-old girl first to receive life-changing treatment in Baton Rouge area

7 years 2 months 5 days ago Wednesday, May 10 2017 May 10, 2017 May 10, 2017 5:46 PM May 10, 2017 in News
Source: WBRZ

BATON ROUGE - A 12-year-old girl from Central will be the first person in the capitol area to receive a new treatment for her rare disorder.

Sydney Donovan suffers from a rare genetic disorder known as Spinal Muscular Atrophy (SMA). It's similar to muscular dystrophy in that it degrades her muscles over time, weakening Sydney and leaving her with a heart condition. 

"We were told she would get worse over time, and this year was the worst," said Sherry Donovan, Sydney's mother.

Sydney was diagnosed as an infant. She grew strong for a time, despite not walking until age 4.

But her disease eventually caught up with her. And now, at the age of 12, she doesn't leave home without her wheelchair. 

She was even scheduled to undergo a serious spinal surgery until her doctor proposed a different treatment.

"Her doctor, we sent him all the information," Sherry said. "He looked at it, he canceled the surgery, and said she was a prime candidate for this drug."

Sydney received her first dose of Spinraza Wednesday, a drug which is injected into the spine. In many cases it has reversed the effects of SMA and was only recently approved by the FDA. 

Sydney is scheduled to receive three treatments annually for the next few years.

"She's the hospital's first candidate, and we're just thrilled to be here to get her new life started," Sherry said.

The drug could help save the lives of the most severe cases of SMA, often found in newborns. But it's also expensive, and just 10 doses over the next three years will cost $1.5 million.

A spokesperson for the Louisiana Department of Health said Spinraza is covered for all Medicaid beneficiaries as a pharmacy benefit.

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