SCID families rally to support tests at birth - KPLC 7 News, Lake Charles, Louisiana

SCID families rally to support tests at birth

31 states test for SCID at birth. (FOX 8 Photo) 31 states test for SCID at birth. (FOX 8 Photo)
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.

Copyright 2015 WVUE. All rights reserved.

  • More Local NewsNewsMore>>

  • FIRST ALERT FORECAST: Sunshine helping the roads dry up, with another cold night ahead

    FIRST ALERT FORECAST: Sunshine helping the roads dry up, with another cold night ahead

    Wednesday, January 17 2018 12:45 PM EST2018-01-17 17:45:05 GMT
    Another cold front on its wayAnother cold front on its way

    For the rest of today, the sunshine will help dry up the roads and melt any ice today. The temperatures will remain cold today, but will get above freezing later this afternoon. However, temperatures will remain in the 30s. Those few hours where we are above freezing will be helpful to melt the ice and improve road conditions. Tonight, temperatures will be cold once again. There is another hard freeze warning in effect tonight. 

    More >>

    For the rest of today, the sunshine will help dry up the roads and melt any ice today. The temperatures will remain cold today, but will get above freezing later this afternoon. However, temperatures will remain in the 30s. Those few hours where we are above freezing will be helpful to melt the ice and improve road conditions. Tonight, temperatures will be cold once again. There is another hard freeze warning in effect tonight. 

    More >>
  • Southwest Louisiana arrest report: Jan. 17

    Southwest Louisiana arrest report: Jan. 17

    Wednesday, January 17 2018 12:40 PM EST2018-01-17 17:40:04 GMT

    Ireall N Chest, 25, Harvey: Two counts instate detainer.  Troy Scott Coker, 35, Sulphur: Two counts of failure to register as a sex offender. Bond: $15,000. Anthony Dashuan Williams, 19, Lake Charles: Simple burglary, illegal possession of stolen things, six counts of contributing to the delinquency of juveniles, theft. Bond: $5,000.  Dontrelle Washington, 34, Lake Charles: Instate detainer.  Dion Matthews Smith, 36, Lake Charles: Direct contempt of court, battery, ...

    More >>

    Ireall N Chest, 25, Harvey: Two counts instate detainer.  Troy Scott Coker, 35, Sulphur: Two counts of failure to register as a sex offender. Bond: $15,000. Anthony Dashuan Williams, 19, Lake Charles: Simple burglary, illegal possession of stolen things, six counts of contributing to the delinquency of juveniles, theft. Bond: $5,000.  Dontrelle Washington, 34, Lake Charles: Instate detainer.  Dion Matthews Smith, 36, Lake Charles: Direct contempt of court, battery, ...

    More >>
  • TRAFFIC: LCPD asks drivers to avoid I-10 in Lake Charles, says interstate covered in ice

    TRAFFIC: LCPD asks drivers to avoid I-10 in Lake Charles, says interstate covered in ice

    Wednesday, January 17 2018 11:38 AM EST2018-01-17 16:38:29 GMT
    (Source: Louisiana State Police)(Source: Louisiana State Police)

    Authorities continue to urge drivers to stay off the road in Southwest Louisiana, due to the chance of ice on the roads.

    More >>

    Authorities continue to urge drivers to stay off the road in Southwest Louisiana, due to the chance of ice on the roads.

    More >>
Powered by Frankly