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Local family raises awareness for SMA

A family in Forsyth county is raising awareness about SMA, as their young child battles the genetic disease.

CUMMING, Ga. — Eric and Valerie White have two young boys. Their oldest, Henry, has Spinal Muscular Atrophy, a genetic disease that affects voluntary muscle movement. The couple says they had never heard of this disease, prior to Henry’s birth.

“Raising awareness is definitely our goal,” Eric said. “We were completely blindsided by this.”

“When I was pregnant, I had taken every test the OB offered me, and [SMA] was not one that I was offered,” Valerie said. “I asked my doctor afterwards why they did not offer me that when I wanted everything, and she said it was not a standard or routine test that they run.”

At just 11 weeks old, Henry received his first dose of an experimental drug. At that time, the life expectancy for a child with SMA was 1.5 years, but thanks to advanced medication and the due diligence of his parents, Henry is now 3-years-old and continues to defy the odds. Although Henry has made many strides, it’s not an easy life for the young child who relies on a wheelchair to get around. He also struggles with things many of us take for granted, like the ability to chew.

“He doesn't eat orally. Everything is tube fed through the stomach,” his mother Valerie said. “When you think muscles, a lot of people think arms and legs in that kind of movement. But it's actually everything from swallowing and breathing. But it doesn't impact his brain.”

According to the Whites, the sooner a child with SMA begins treatment, the better chances they have of beating the disease.

“If they get it at birth before they lose any functionality, they are meeting all milestones and actually walking,” Valerie said.

“if we just have one family detect SMA sooner and get this treatment faster, it would make a lot of difference,” Eric said.

To learn more about SMA, click here.

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