Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies.
You may also know it as the “Bubble Boy” disease. Here at Patient Worthy, we’ve talked a bit about David Vetter, a little boy who suffered from SCID and lived most of his life in a literal bubble before his premature death in 1984.
Yes, John Travolta’s character in “The Boy in a Plastic Bubble” is based on a REAL person.
Essentially, SCID increases the risk of infections in its victims, which is why little David lived out his life surrounded on all sides by safe, protective plastic. Unfortunately, SCID is still around today, along with a whole host of other diseases like it. What’s fortunate is that, nowadays, there are treatments that can go as far as cure it.
But let’s move to the topic of interest… at least for me.
For whatever reasons—at which I’ll try to guess momentarily—when I hear or read the words “bubble boy,” I feel this visceral feeling, though very slight, to debunk the term and cancel it from our lexicon entirely. It’s not that I find it derogatory, or offensive even. I don’t have SCID, nor does anyone in my family.
But, to me, it’s like calling someone with glasses “four eyes,” or someone with hemophilia a “free bleeder.” What these two terms have in common is that they are meant to demean. They are what people who don’t “get it” call people who have “it.” They have the power to pigeonhole a person and make them nothing more than their disease. Look, it’s one thing for one person with hemophilia to call another person with hemophilia a “free bleeder.” But, as we all know or don’t want to admit, it’s another thing entirely when it comes from someone who can’t empathize.
Now, let’s go back to the name “bubble boy.” Is it meant to demean? Not necessarily.
Do the words “bubble” or “boy” offend you? Probably not. But what are they doing? They’re defining David by his disease—a disease that stole away a life he COULD have had. I guarantee you that David would rather not be remembered this way. I imagine David would want to be remembered by his smile. His laugh. His interests. Wouldn’t YOU?
Did you know David had a fondness for the stars? When he was 11 years old, he asked his parents if he could go outside and look at the stars. He was only allowed 20 minutes, but I’m willing to bet it was worthwhile.
Let’s remember David for these moments—the moments that give people living with diseases like SCID hope; the moments that David LIVED for. Let’s remember David for his life, and nothing else.
I want to dedicate this article not to the “Bubble Boy,” but to the boy who, to this day, gives humanity hope in the face of all kinds of adversity.
