The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
David Vetter, affectionately known as the boy in the bubble, was born with severe combined immune deficiency (SCID), one of the most severe types of primary immunodeficiency. At the time of his birth in 1971, a bone marrow transplant from an exact HLA-matched donor was the only cure for SCID, but there was no match available in David’s family.
For 12 years, David captured the world’s attention as he lived in protected environments to maintain relatively germ-free surroundings at Texas Children’s Hospital. Speaking for her family, including David’s father and sister, his mother Carol Ann Demaret explains, “As parents of an afflicted child, the only thing we had in our control was to see that David received the best possible care. We trusted our doctors. We were grateful for the bubble; the bubble was the only treatment option available for David at the time. If it hadn’t been for the bubble, we would not have had him for 12 years. Our goals were to keep David safe, bring the outside in, and make sure he felt loved.”
“David’s life showed courage, patience, and understanding. He accepted the unique circumstances of his life, but waited to find the way to come out of his bubble. We prepared him to be able to socialize and eventually join the outside world. Science was protecting David, this was never an experiment.” David had friends, was schooled at home and the hospital by teachers, and played and fought with his sister just like any little brother. He was involved in all aspects of their home life. Carol Ann fondly remembers Halloweens when David, dressed in a costume in the bubble, handed candy out to other trick-or-treaters through the rubber gloves.
They were careful to keep him away from the attention in the media, but once when he was eight or nine, David saw his picture in the newspaper. “The next day, he told me that he was a star,” Carol Ann lovingly remembers, “I didn’t know what he was referring to and told him that, yes indeed he was a star because he lights up my life. David quickly corrected me and told me that he was a star because his picture was in the paper the day before and stars don’t have to clean up toys. I told him that his picture wasn’t in the paper today, so today you clean up your bubble!”
Sadly in 1984, four months after receiving a bone marrow transfusion, David died from lymphoma—a cancer later determined to have been introduced into his system by the Epstein-Barr virus. Carol Ann carries on David’s legacy today through her work with IDF as a long-time member of the Foundation’s Board of Trustees. Carol Ann believes, and science has stated, that because of what was learned from David’s gallant life and death, many children with SCID have since been diagnosed early, received bone marrow transplants and now lead healthy lives. In her words, “David was a great blessing to our family and to the world.”
Host a private screening of Compromised: Life Without Immunity to experience the resilience, hope, and determination of the PI community. And know that your hosted event can be two people or 100+!
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