'Bubble Boy' legacy celebrated on his 40th birthday

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by KEVIN REECE

KHOU 11 News

Posted on September 23, 2011 at 11:20 AM

Updated Friday, Sep 23 at 6:37 PM

HOUSTON—This Saturday dozens of doctors, patients, and a still grieving, but very proud mom, will gather for a celebration at Texas Children’s Hospital for the “Bubble Boy’s” monumental gifts to medical research and his impact on perhaps millions of lives.

David Vetter, born September 21, 1971, became known to the world as “The Bubble Boy.” He was born without an immune system and the best technology of the day was to raise him in sterile isolation until a cure could be found.

Plastic bubbles were built for him at the hospital and at home in Montgomery County. NASA even made David his own space suit so he could roam free.

A perfect bone marrow match couldn’t be found, so after 12 years doctors decided to chance a bone marrow transplant from David’s sister. The marrow contained undetected traces of the Epstein-Barr virus.

David died Feb. 22, 1984.

“The only time that I touched David was as he lay dying,” David’s mom Carol Ann Vetter Demaret said. “I did ask permission to touch his hand and they gave it to me.”

But David’s mom agreed to talk to us on the 40th anniversary of David’s birth, not to grieve, but to celebrate all her son has achieved.

“David’s DNA has been illuminating the scientific world,” said William Shearer, M.D., Ph.D.

Shearer was among the team of physicians who tried to pioneer treatments to keep David alive. David became the pioneer instead.

“My life has certainly been changed because of David,” said Shearer, who now leads the David Center at Texas Children’s.

As many as 100 infants are born each year with SCID, Severe Combined Immune Deficiency. At the time of David’s birth little was known about the disorder. SCID was a grave diagnosis. There was no cure.

David’s life began to change all that.

“He molded my career and my passion for primary immune deficiency and I’m forever grateful for that,” said Dr. Celine Hanson, chief of the allergy and immunology clinic at Texas Children’s Hospital that bears David’s name.

“The first thing he did is alert pediatricians, and physicians and parents to the fact this disorder existed,” Hanson said.  

Before David, before the David Center at Texas Children’s, doctors didn’t know all that much about immune system disorders. Research based on David led to faster treatment, earlier detection of immune disorders, and transfusions, transplants, and cures for children as young as 6 weeks old.

Computerized bone marrow registries can now offer patients greater chances at finding a match that could save their lives. An option David never had.

“I cried. It was a little devastating because I didn’t know what his chances would be of survival,” said Katenia Holliday, a southwest Houston-area mom who also had a son born with SCID. But Xavier survived after a bone marrow transplant from his mom when he was still an infant.

Xavier is now 12 years old and never had to live in a bubble.

“My son would not be here without David,” said Holliday.

“I think I would say thank you for saving my life,” said Xavier when asked what he would say to David if he could. “I’m sorry that he died, but still thank you for helping me out.”

“The knowledge from David’s study contributed to our ability to fight AIDS, to fight virus infections, to fight cancer,” said Shearer. “And all of that evolved because of David. He was the single most important child that taught us all these lessons.”

“You’re talking about millions of people. So one person’s life to affect that many people in the world is an extraordinary accomplishment,” he said.

“That makes a very proud mom,” said Demaret.

These 40 years after David’s birth, his mom continues to tell his story. She speaks regularly to children at the school named after her son: David Elementary in the Woodlands. David’s Dream Run rasies money each year for Texas Children’s Hospital. The David Center, with a staff of more than 70, continues to guide research and treatment of immune deficiencies. David’s blood cells are even still studied at Texas Children’s for additional breakthroughs.

“I try and remember David’s life as a beginning, a middle, but I don’t see an end to it,” said Demaret. “And it makes me optimistic to wake up in the morning and think about his brave life and the blessing that his life has given many of us.”

“I prayed when David passed away that the bubble would burst for all time and my prayers have been answered,” she said.

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