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 Article of Interest - Immune Deficiency

'Bubble Boy' Fighting the Odds

by Jim Ritter, from the Chicago Sun Times, November 6, 2002
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From the day he came home from the hospital, Jacob "Ray Ray" Davis couldn't stop coughing.

When he was 5 months old, Ray Ray suffered viral diarrhea for 17 days. A few weeks later, he caught pneumonia after going to church.

Last May, doctors discovered what's wrong with Ray Ray. He has a gene defect that causes "severe combined immune deficiency," better known as "bubble boy" disease. Ray Ray's immune system doesn't work, making him dangerously susceptible to any and all germs.

The disease has been reported in fewer than 1 in 500,000 babies, although it could be more common because some infants die before they are diagnosed.

In the past, immune-deficiency babies almost always died in infancy from runaway infections. In the 1960s, doctors began isolating them in sterile environments. The most famous case was a Houston boy who spent his entire life inside a plastic bubble with filtered air. He died at age 12.

But patients don't have to live inside bubbles any more. A remarkable drug approved in 1990, Peg-ADA, supplies the critical ADA enzyme that's missing in immune-deficient babies. Without the ADA enzyme, the infection-fighting white blood cells don't work.

Last May, Ray Ray began receiving twice-weekly shots of Peg-ADA. His cough stopped immediately, and he hasn't been seriously ill since. Now 1 year old, Ray Ray is learning to walk, and his teeth are coming in. He's a happy, good-natured baby who loves being read to.

"He's a fighter. He wants to live," said his mother, Zina Berryhill. "I call him my chosen one. My survivor. My gift."

But Ray Ray's immune system still doesn't work normally. Once every four weeks, he must get an IV infusion of antibodies. Scratches take months to heal. And Berryhill takes great care to avoid germs. Only family members are allowed to visit their south suburban home. They take off their shoes and wash their hands, and if they have so much as a sniffle, they stay away from Ray Ray.

For now at least, Ray Ray is relatively healthy. But about 10 percent of patients develop resistance to Peg-ADA. Others develop chronic lung disease, said Dr. Barbara Hendrickson of the University of Chicago, who is treating Ray Ray.

So some day, Ray Ray may need to get a bone marrow transplant from a donor who has a healthy immune system. Bone marrow, the soft fatty tissue inside bones, is where disease-fighting white blood cells come from.

But no one in Ray Ray's family matches Ray Ray. Nor are there any matches on the National Marrow Donor Program. A patient is most likely to find a match from someone of the same ethnic group. Ray Ray is African American.

Nationwide, about 380,000 blacks have registered as potential marrow donors. Nearly seven times as many whites--2.6 million--have registered. "My people need to be more educated," Berryhill said.

LifeSource Blood Services has held about 10 marrow donor drives for Ray Ray in African-American neighborhoods. About 250 people have registered, and LifeSource hopes to increase the number to 1,000 by January. The next drive will be held from 10 a.m. to 2 p.m. Saturday at Liberty Baptist Church, 4849 S. King.

It's a long shot any of them will match Ray Ray. But 3,000 other patients with leukemia, blood disorders and other diseases are waiting for marrow transplants, so it's possible that someone who registers to help Ray Ray will end up saving the life of someone else.

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