Spotlight on: Sean Hamilton

Sean Hamilton in 1994

Sean Hamilton was born on September 27th, 1993 and diagnosed with Wiskott-Aldrich Syndrome within the first few weeks of his life and had two Bone Marrow Transplants in the following years. His first BMT was in April 1994. After problems with chimerism, his family was told that he would need to have another Transplant in the years to come. After some developments in chemotherapy, he underwent another BMT in May of 1998. Since then he has lived his life to the fullest he can without any symptoms.~

Q: Thinking about your experience with WAS, can you give one piece of advice to those currently dealing with it?

SH: Most of what I remember are the good things. I don’t remember too much of the bad, so I’d hope that parents can be sure that, although it may be a tough time, looking back on it, there will be good times as well. Sometimes we remember the good memories more than the bad.

Q: So what are some of the bad memories you have?

SH: The time I was most scared I remember well: when my catheter had to be placed. My parents weren’t allowed in the room with me. It was tough to be torn away from them. But the doctors knew how to handle it. They were nice and let me choose the flavor for the anesthetic: cherry!

Q: So it sounds like you have put a positive spin on the scary memories that you have. Is that true for others as well?

SH: Yeah, well like I said, I don’t really remember being scared. I was a kid. I wasn’t focusing on the looming problems. I was more focused on what it meant I could do or could not do. I was allowed to play with my Gameboy and watch my favorite shows. I was allowed to see my family and play with them. I could still do what kids do, even if I was stuck in a bed or in my room. People ask me if I wish I had had a “normal” childhood, but I don’t really even know what that means. I didn’t know I was “missing out” on a “normal” childhood. I don’t have a second childhood experience that I can compare mine with, but even if I did, it would not change the fact that I liked my childhood.

Q: Even when other people reminisce about their own childhood? Does that ever present a problem?

SH: Not in that case. Never in making me feel like my childhood was somehow not “complete” or “normal.” If it does, then it usually is because of instances when people talk about playing, say, flashlight tag. I can’t bring up any funny stories like they do because all I can think of is playing in my hospital room. I couldn't play regular tag because I couldn't touch anything that wasn't sterile. I had a lot of fun back then and it’s still a good memory, but I don’t want to chance it if people won’t see it that way.

Q: Some people would say that such an experience might take away your childhood innocence. Do you think it did?

SH: I do think I have a bit of a different view on life that at the time was very mature for that age, but I bet anyone who knew me at the time was say that I was just as much of a little brat as any other kid.

Q: Haha OK. Well how about any triggers? Is there anything that makes you instantly think back?
SH: A few things do: The smell of disinfectant, those red pull-wagons and clowns.

Q: Really? Why those things?

SH: Well the disinfectant smell just never leaves. Every time I walk into a room that’s just been cleaned all I can do is think about the hospital. The red pull-wagons remind me of it because when I was released they asked me if I wanted to be wheeled out in a wheelchair or a red pull-wagon, so like any other 4-year-old boy, I opted for the wagon!

Sean Hamilton and Doctors — June 1998

And the clowns. There were a few doctors that would dress up as clowns and then be funny for all the kids who couldn’t leave their rooms. It was a great idea on the part of the hospital, although I am definitely glad that I wasn’t afraid of clowns back then!

Q: So let’s move up to the present. Any long term effects from the BMTs?

Sean Hamilton in February 2014

SH: Last year I took a fertility test after being reminded of the possibility of being infertile at the 2013 Wiskott Convention in Baltimore. It came out negative. So according to that test, I am indeed infertile. However, my doctor told me this year to take another, which I will be doing over this winter break. Besides the infertility, I also have hypothyroidism. But considering everything, that’s a fairly minimal takeaway from WAS. I am more than happy to live with that.

Q: So in the future, do you see yourself having kids of yourself?

SH: I have always wanted to be a parent, so finding out about the infertility was definitely hard. I have thought about adoption and people have been telling me about these operations to make me fertile again. So those have also crossed my mind, but in the end I don’t want to risk passing WAS on. I’ve always wanted a daughter. Having a boy would put a definite end to WAS in my family, but I don’t think I’d want to chance it.

Q: How about the rest of your future? Do you see WAS having any other impact on your life?

SH: Besides the fertility issue, I only see it affecting me positively. It’s given me experience that I can now use to help those dealing with it now. Hopefully I can make a difference in even just a few families’ lives. ~

A single golf clap? Or a long standing ovation?

By clapping more or less, you can signal to us which stories really stand out.