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>>

  • Shrimp and Jazz Fest is Saturday June 23rd

    Shrimp and Jazz Fest is Saturday June 23rd

    Shrimp and Jazz Fest is Saturday June 23rd

    Friday, June 22 2018 10:45 PM EDT2018-06-23 02:45:05 GMT
    image courtesy of thechangetrend.comimage courtesy of thechangetrend.com
    image courtesy of thechangetrend.comimage courtesy of thechangetrend.com
    Jazz music has been a staple of Louisiana's culture for many years, and you can help celebrate it this weekend. The Gulf Coast Shrimp and Jazz Festival runs Saturday from 11 a.m. to 4 p.m. at the Lake Charles Civic Center on Saturday, June 23rd. Jazz in the Arts is hosting a free jazz workshop before the festival starting at 9, and Jazz After Dark will follow the festival at 7 p.m.  Musician Mickey Smith Junior, with be performing at the event. Mickey Smith Jr. said in a statem...More >>
    Jazz music has been a staple of Louisiana's culture for many years, and you can help celebrate it this weekend. The Gulf Coast Shrimp and Jazz Festival runs Saturday from 11 a.m. to 4 p.m. at the Lake Charles Civic Center on Saturday, June 23rd. Jazz in the Arts is hosting a free jazz workshop before the festival starting at 9, and Jazz After Dark will follow the festival at 7 p.m.  Musician Mickey Smith Junior, with be performing at the event. Mickey Smith Jr. said in a statem...More >>
  • Compromise reached in special session

    Compromise reached in special session

    Friday, June 22 2018 9:28 PM EDT2018-06-23 01:28:47 GMT
    Rep. Paula Davis, a first-term legislator, presented the compromise bill that resolved a battle in the House over renewing part of a cent of state sales tax. (Source: Sarah Gamard/LSU Manship School News Service)Rep. Paula Davis, a first-term legislator, presented the compromise bill that resolved a battle in the House over renewing part of a cent of state sales tax. (Source: Sarah Gamard/LSU Manship School News Service)

    By Paul Braun, Drew White, and Tryfon Boukouvidis LSU Manship School News Service BATON ROUGE--The House erupted into cheers Friday after voting 74-24 to renew 0.45 percent of an expiring penny of sales tax until 2025, breaking a huge logjam and reaching a compromise with Gov. John Bel Edwards after nearly five months of intense fighting. The bill would generate $466 million in additional revenue next year, falling $102 million short of the $648 million that Edwards had originally ...

    More >>

    By Paul Braun, Drew White, and Tryfon Boukouvidis LSU Manship School News Service BATON ROUGE--The House erupted into cheers Friday after voting 74-24 to renew 0.45 percent of an expiring penny of sales tax until 2025, breaking a huge logjam and reaching a compromise with Gov. John Bel Edwards after nearly five months of intense fighting. The bill would generate $466 million in additional revenue next year, falling $102 million short of the $648 million that Edwards had originally ...

    More >>
  • Some Sulphur residents confused by city utility increase

    Some Sulphur residents confused by city utility increase

    Friday, June 22 2018 8:47 PM EDT2018-06-23 00:47:58 GMT
    Sulphur residents were notified that they would see an increase in their city utility rates.  The flat monthly rate of $60.15 will be increased to $64.90 in Sulphur residents' bills on July 1.Sulphur residents were notified that they would see an increase in their city utility rates. The flat monthly rate of $60.15 will be increased to $64.90 in Sulphur residents' bills on July 1.

    Sulphur residents were notified that they would see an increase in their city utility rates. The flat monthly rate of $60.15 will be increased to $64.90 in Sulphur residents' bills on July 1. Some residents said they wish they would have been more informed prior to the meeting where this hike was presented.  The full breakdown of the increase includes:                      2017-2018       2018-2019 Gar...

    More >>

    Sulphur residents were notified that they would see an increase in their city utility rates. The flat monthly rate of $60.15 will be increased to $64.90 in Sulphur residents' bills on July 1. Some residents said they wish they would have been more informed prior to the meeting where this hike was presented.  The full breakdown of the increase includes:                      2017-2018       2018-2019 Gar...

    More >>
Powered by Frankly