David’s life has not been forgotten as his legacy lives on in his hometown of Shenandoah and neighboring community The Woodlands. Not only has he been an inspiration in science and medical progress, but David Vetter touched hearts of people all over the world with his courageous spirit amidst unimaginable challenges. His impact far outreaches our community affecting lives throughout the United States and beyond.
Delivered into a “bubble,” or isolator, at birth in 1971 to protect him from illness, David was born with Severe Combined Immunodeficiency Disease (SCID) which left him without an immune system to fight off even the smallest of sicknesses. Only the 6th “germ-free delivery” in the world at the time, a common cold or virus could have taken his life. Loving parents, David and Carol Ann, knew their child needed to have normal life experiences and so the isolated area, or bubble, grew with him. He lived, learned, ate meals alongside family and played – all within his bubble. He became very close to his medical team who spent a great deal of time with David, including the late Dr. William T. Shearer, who led his care team and blazed trails for pediatric immunology. David’s life was spent inside the germ-free zone, however, human interaction was so important to him. “He showed such affection and love for his family and others. He had a huge capacity for loving and caring,” his mother, Carol Ann Demaret says.
David Vetter endured a life filled with obstacles, but he always looked on the bright side and found joy in his close bond with his family, including his older sister, Katherine. David cherished connections with others and made even the smallest interactions special. “One year at Halloween, he wanted to give out candy instead of dressing up, so he’d reach in his gloves which extended outside his space to give candy to other children,” says Carol Ann. His world was expanded when NASA designed a customized suit resembling a space suit protecting him so he could venture outside of his enclosed unit. Previously displayed in The Smithsonian, his famed suit and David’s brave story continue to be remembered by so many.
David chose to live life to the fullest and grasped every opportunity presented to him. A student in Conroe ISD, teachers would visit his home or Texas Children’s Hospital weekly for his education. Occasionally, a teacher would bring a small group of students to visit David and teach a lesson as though he was in a classroom setting. “I felt that everybody had something unique to offer David. He was very inquisitive and enjoyed visitors,” Carol Ann says.
Not long after David’s death in 1984 at age 12, Texas Children’s Hospital approached David’s parents about an idea to create The David Center, honoring their son, with the hope that children born with compromised immune systems would have a place to be treated. They agreed and in addition, approved the preservation of his cells for research. “I didn’t realize the importance at the time, but I trusted that it would be for generations to follow. They are still testing David’s cells,” she says.
Javier Chinen, M.D., Ph.D., Chief of The David Clinic at Texas Children’s Hospital The Woodlands, became involved with the clinic even before it expanded to Texas Children’s Hospital The Woodlands in 2016. “It is not a secret that part of David’s legacy has been its essential role in the public awareness of SCID. This awareness has promoted the research leading to the inclusion of SCID in the U.S. newborn screening panel for inherited diseases,” he says. The David Center and The David Clinic are within the Allergy and Immunology division at Texas Children’s Hospital where Carol Ann is a regular volunteer.
Carol Ann began advocating for SCID newborn screening in Texas after joining the Board of Trustees for the Immune Deficiency Foundation following David’s death. “My prayer when David passed away is that the bubble had burst for all time,” she says. And that prayer has been answered over the years. Texas followed many other states adding SCID to the panel in 2012 with early diagnosis of key importance. Now, every state has added the SCID to their newborn screening panel. Today, children with SCID do not live in isolation, and families often turn to stem cell transplantation for treatment with gene therapy in current development. “At Texas Children’s Hospital, we are part of these worldwide efforts and actively receive infants with SCID for diagnosis and treatment,” Dr. Chinen says.
During David’s life, the media protected his last name and he was referred to as “David.” So, in 1990, when David Elementary opened honoring his name, the community rallied around the family and took it a step further in commemoration. David’s Dream Run and David Day have been meaningful traditions at the school for 26 years. A community-wide 5k event, organized by the David Elementary PTO, David’s Dream Run raises crucial funds for The David Center and The David Clinic.
Tamara Herod, Committee Chair for David’s Dream Run and David Elementary School parent, says, “This event is mostly about teaching our students the importance of helping others and honoring David’s life. I believe they will carry the compassion and awareness they learn from this event with them throughout their lives.” David’s Dream Run rallied 1,000 participants for this year’s race and raised a record $43,000 going to The David Center and The David Clinic. Walls adorned with the students’ artwork line the clinic halls and demonstrate the David Elementary School commitment to teach their students kindness, compassion and service. “This event has raised funds that advanced our research in SCID. We are very thankful for the community support of the research focused on improving the care of SCID patients,” Dr. Chinen states.
Each year on the day prior to the run, Carol Ann visits the students at David Elementary. The day has lovingly been named David Day, when Carol Ann speaks about David’s life as well as how the fundraising event helps others. “They ask so many questions from his favorite color to many other things. I always want to end on a positive note. I don’t want the children to be sad about David. I think the children will carry the spirit of David throughout their lives,” Carol Ann says.
Residents in The Woodlands continue to be touched by David’s memory in various ways – whether they are driving down David Memorial Drive in his hometown of Shenandoah, having a child attend David Elementary School, participating in David’s Dream Run or visiting Texas Children’s Hospital The Woodlands where The David Clinic resides. “I’m overwhelmed by the community’s continued embrace and support of David’s memory,” Carol Ann says, “He would be pleased to know his sacrifices were not forgotten. His gallant life and death have meant something to the world.”
Article by: Mindy Jones