Texas 1 of 12 states to test newborns for rare immune deficiency disease

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by JANET ST. JAMES

WFAA

Posted on January 24, 2013 at 9:01 PM

DALLAS, Texas –– A mask protects Trey Freeman's fragile immune system, which is just 28 days old. 

Two days after Christmas, the six-year-old received a bone marrow transplant for SCID, Severe Combined Immunodeficiency Disease.  

SCID is rare, affecting about 1 in 100,000 births, according to  study ordered by the state of Connecticut regarding the disease.  

"In the old days it was sort of known as the baby in the bubble disease," explained Dr. Carl Lenarsky, a hematologist/oncologist at Medical City Children's Hospital in Dallas.  

Lenarsky said the immune disease often isn't detected until it's too late. In December, Texas became one of a few states to screen all newborns for SCID within 48 hours of birth. The test itself costs less than $10.

"If you have this and it can be detected in the newborn period before you get sick," Lenarsky said. "The chances of us curing the child are very, very good. If we don't find it until the child is sick, then the chances are not good."

Trey has an older brother who has survived SCID so his parents knew what to expect. Emily Freeman is a genetic carrier of the disease.

"Which we were sad to hear the news," said Emily. "But it gave us the opportunity to make sure that he (Trey) was protected from day one and wouldn't be exposed to anything that could make him very sick and cause complications."

The Freemans believe the newborn screening will give other boys and girls the same chance Trey has to grow up.

"We're grateful every day that we were able to know in advance," said Jeremy Freeman. "And give these guys a good chance to have a good healthy chance."

On January 21, 2010, the Advisory Committee on Heritable Disorders in Newborns and Children voted unanimously to add screening for Severe Combined Immune Deficiency or SCID to the core panel for universal screening of all newborns in the United States.   

Currently 12 states and Puerto Rico screen for SCID.

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