Saturday, February 22, 2014

Bubble Boy, I Remember You

In tournament poker the term "Bubble," is the last finishing position before entering the payout structure. Simply put, no body gets anything until the Bubble Boy is gone.

Most people younger than 30 years of age may not know that there once was an actual boy dubbed "David, the Bubble Boy," who spent his entire natural life in a sterile plastic bubble. The media made David famous. So much so, that a 1976 made-for-TV-move: "The Boy in the Plastic Bubble," attempted to project how life would unfold for David as a teenager, and was later parodied in the 2001 comedy entitled: "Bubble Boy."

On September 21, 1971, David Vetter was born with severe combined immunodeficiency (SCID), also known as "bubble boy disease," which meant his body had no immune system to fight off diseases. I am just 17 days older than David and I grew up following his life via numerous news stories and documentaries. Every now and then, when I hear or say the term, "Bubble Boy," I think of him. Today, on the 30th anniversary of his passing, I write this in remembrance of the original Bubble Boy who's death made it possible for thousands of people born with immunodeficiency disorders to live full lives.

In the 70's and early 80's, society marveled at the science that made it possible for David to live safely in a bubble while doctors worked diligently to find a cure for his ailment. David's older brother had died at the age of 7 months from the same disease so, on it's face, David's life was miraculous. His story was an inspiration to me when I was growing up because David's plight taught me to appreciate all that I had.

I was a child myself. I had no idea that controversy overshadowed David's treatment. I knew nothing about medical ethics. All I knew was that David lived in a bubble and although I was sad for him, I was hopeful that doctors would quickly find a cure so that he would be able to go outside and play like a normal little boy. I thought it was just that simple.

David lived in his bubble for 12 years before advances in medicine provided a glimmer of hope for a normal life. The announcement that David would receive a bone marrow transplant from his sister was headline news. I remember believing that David was on his way to freedom and would live happily ever after like the character portrayed by John Travolta.

Then one morning rumors of David's death spread like wild fire throughout my junior high school. My first period class that day was P.E. and students asked the teacher if the rumors where true. She confirmed what we all feared and allowed us time to grieve. Many of us just stood there that morning and cried on the blacktop while we tried to understand what had gone wrong.

Sadly, the Epstein–Barr virus (common in 95% of healthy adults) had not been detected in pre-screening tests. David passed away on February 22, from Burkitt's lymphoma, an autoimmune complication associated with the virus. The year was 1984, and although Big Brother's tyranny had not been realized, fears of nuclear war were quickly being replaced by rumors of a virus that could destroy the immune system, sentencing it's victims to a tragic death not unlike David's.

Today, David is credited for at least two major scientific advances in medicine: 1) understanding the relationship between viruses and cancer, and 2) the use of gene therapy to cure genetically inherited disorders like his own.

David paid the ultimate price, from his first breath to his last, that has left a lasting legacy 30 years after his death. Although the years of research performed on David could not save is life, the knowledge that was gleaned from it continues to pay dividends and will save lives for centuries to come.

While stories like David's raise serious ethical debates about scientific research. I just want to say, thank you David, you will not be forgotten.

Reference/Recommended reading:

PBS American Story: The Boy in the Bubble (2006), detailed biographical information regarding the educational documentary based on the life of David Vetter.
"Bubble Boy" 40 years later: Look back at heartbreaking case (2011), a photographic reflection of David Vetter's live.
Body Shock: The Boy in the Bubble (2006), a video documentary that includes interviews with David's mother and doctors.