Supporting the boy in a bubble

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If you happen to spot me on campus today, you might not see anything out of the ordinary. If you look really closely, you might see that I need a haircut, that I have a rather bad sunburn on my arms or that I’m wearing contacts instead of my glasses (spring means sun means sunglasses, which don’t work well over other glasses). But really, beyond that, you probably won’t see anything.

What you’re missing is the fact that I’m wearing yellow. On any other day, the color of my clothing wouldn’t make much more difference than the way I wear my hair — it’s just what I felt like doing that particular day.

But today, I’m going out of my way to wear yellow. You may even catch me taking a selfie or two or 10 — something I don’t do that often considering I’m a twenty-something college student.

Today, there will (hopefully) be many people around the world wearing yellow — and it’s all for one kid.

His name is Seth, and honestly, he looks like any other little five year old boy. He has a big, sweet smile. He loves things like Fireman Sam (a Welsh television program for kids) and the color yellow. In fact, he really loves the color yellow.

Seth was born with Severe-Combined Immunodeficiency (SCID). Basically, his body can’t fight off infection — this makes him very susceptible to any and every illness out there.

Seth has already undergone one bone marrow transplant and will be undergoing a second soon — thus the call for people to wear yellow. Photos of the people in yellow (who’ve tagged themselves #WearYellowForSeth) will be placed in his ultra-sterile hospital room so he can see just how much support he has for his recovery. His video asking for the small favor has gone viral, meaning his room should be a sea of yellow and will hopefully make the coming months easier for him.

Immunodeficiencies are not commonly talked about (save for Travolta’s “bubble boy” image), and in a twisted way, it makes sense. Those who suffer from immunodeficiencies are often isolated due to susceptibility to illness (though rarely to the extreme level that Seth is) or incredibly long recovery times from colds or bugs would knock a person with a standard immune system down for a day (if that).

Beyond the effects that the illnesses and treatments themselves have on those who are immunodeficient, it’s an invisible disorder. The person looks healthy enough.

To give you an idea of what it’s like growing up with a crap immune system, let me tell you my story. I was diagnosed with Primary Immunodeficiency (PID) at age three. I was pulled out of school in the eighth grade because I couldn’t get healthy. Growing up, I was constantly on prophylactic antibiotics (antibiotics taken even when an infection isn’t present in order to prevent illness) and constantly getting sick. I returned to school halfway through my sophomore year of high school, and even then I had to have special arrangements made due to constant illness. I nearly missed my Junior Prom thanks to Whooping Cough (my vaccine didn’t take and there was an outbreak thanks to those who chose not to vaccinate their children). I have yet to graduate college because I can’t stay healthy and end up missing extraordinary amounts: classes. I have been on medications of some sort since I can remember — including infusions of donated plasma when I was younger (thank you to all you donors out there, by the way — you saved my life). My blood levels for the past year and a half have had me back with in the “low-normal” range, meaning I’m finally starting to grow out of it.

And yet, as frustrating as my story is, I cannot imagine what it must be like for Seth. PID is a walk in the park compared to SCID. I’ve never had a bone marrow transplant. My parents and friends don’t usually have to “scrub in” to visit me when I’m hospitalized. I’m able to feel the fresh air on my face and be out in the world long enough to get sunburned. Seth can’t. Or at least, he can’t yet.

I can’t tell the future — I don’t know if his body will accept the new bone marrow transplant (I pray it does). I don’t know what the future has in store for him — I hope it’s recovery. I hope he gets to go out and be a little kid who stays out after dark and gets in trouble with his mom. I hope he gets to ride a bike and scrape his knees and not have to panic every time the flu shot doesn’t cover the right strain of influenza. I hope he never has to hear a doctor say “You don’t look that sick” before treating him. I hope he never has to sacrifice what we all would consider a “normal” life just to live.

I’m wearing yellow for myself today. I’m wearing it for my penpal that the Immune Deficiency Foundation set me up with whose struggles were also far worse than my own. I’m wearing it for all the other kids I met in the hospital who also have immune disorders (whether deficiency or autoimmune). I’m wearing it for my friends who either have or have been affected by SCID, PID or immune disorders in general. But most importantly. I’m wearing yellow for Seth. Stay strong, buddy. We’re all rooting for you.

Kjerstine Trooien is a staff writer for The Dakota Student. She can be reached at [email protected].

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