SCID families rally to support tests at birth

SCID families rally to support tests at birth

NEW ORLEANS, LA (WVUE) - A disease that once forced patients into a plastic bubble is now being conquered with a blood test.

Today parents of kids with Severe Combined Immune Deficency rallied to bring awareness. They're hoping the state will provide blood tests at birth.

Brothers 19-year-old John and 17-year-old Adam Lewis are both sports stars. But neither may not have survived if not for a simple blood test at birth.

Their father, Jason, says the family has been rocked by SCID.

"We have five family members affected by SCID," he said. His wife had two brothers die, and now a nephew and two sons have survived.

The genetic defect strikes male children. They appear healthy at birth, but the disorder quickly robs them of an immune system. Bone marrow transplants have given children hope and life.

Dr. Rebecca Buckley performs bone marrow surgeries at Duke University Hospital.

"Babies transplanted before they got infected had a 95 percent survival rate, she said.

Jason Lewis says there is a moral obligation to test babies early.

"We should spend $7 per test at least on the males of our families born in Louisiana."

Medical science couldn't help Carol Ann Demeret. She lost two sons to SCID. One was dubbed "the boy in the plastic bubble" in a 1976 movie about his life.

"My son died February 22, 1984, at age 12," Demeret said. "We were devastated again. Scientists have said what they learned from my David has been of great importance and offered hope for a whole new approach for medicine."

Thirty-one states currently screen newborns for SCID, but Louisiana is not one of them. The state launched a pilot program in 2010, but it quickly came to an end when funding ran out. DHH officials say the agency has applied for another grant with the CDC for the testing . DHH will find out in September if they have the grant.

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