What is everyday life like with progeria?

Answer 1

This interview was taken in 2001, with John Tacket, the Progeria Research Foundation's first youth ambassador,when he was 13 ½ years old. He wanted other kids to know about Progeria, and that he was really no different than other boys his age. John was an amazing young man, whose courage and wonderful sense of humor continues to inspire us all.

Tell us about school.

I'm in the 8th grade. I go to public school and take the bus every day. It's "loaded" with kids! I kind of like school - It's a lot of work, but I like that my friends are there.

What kinds of activities are you involved in?

I play street hockey, play drums, my dad and I have a knife collection, I belong to the roller hockey and floor hockey clubs, and the academic track club, which holds meets for lots of subjects, like math, science and drama. I really want to learn how to ice skate so I can play Ice Hockey. I also love to draw.

What do you do with your free time?

Homework, playing drums, hanging out with my friends and watching TV. The Disney Channel is my favorite.

Tell us about a typical day for you.

I'm up at 6:30 a.m., I go to school, then baby-sit my 9-year-old sister after school until my mom gets home from work. I also watch TV and play with friends after school and on weekends.

What is your favorite thing to do?

Play drums, play street hockey and be with my family.

What is your least favorite thing to do?

Get up for school!

How long have you known that you have Progeria?

As long as I can remember.

What do you say to people who ask why you look different?

I tell them I have a disease called Progeria.

What do you do or say to people who stare at you?

That bugs me a lot. I'd rather they come over and say hi and ask me directly rather than have them stare from a distance. I think it's rude to stare. Sometimes I wave to the kids, and they wave back.

What are your biggest challenges physically?

It's hard to play Basketball - I need a smaller ball and a shorter hoop, which I have at my house so a lot of times my friends come over to play basketball. Sometimes I get tired, but I just sit down for a couple of minutes and then I'm ready to go. A lot of times it's my friends that want to rest before I do! I have a hard time carrying a lot of books, so I leave 5 minutes early from my classes and go to my locker after every class to switch books for my next class.

What would you like kids to know about you and other children who have Progeria?

We're no different; we do the same things other kids do. Don't be afraid to talk to us.

If you were a parent of a child with Progeria, what would you say to your child as he/she begins to realize that he/she looks different?

I'd say yes, you're different but only on the outside. You can do anything you want and don't let anyone tell you any differently. And I would tell them to treat us the same as any child.

If you were a parent of a child with Progeria, what would you tell your child when he/she discovers that he/she may not live as long as other people?

Well, no one really knows how long they're going to live, so I don't worry about it.

What advice do you have for children with Progeria?

Keep going, follow your dreams. My dream is to be a studio drummer and advertising agent.

Is there anything else you want to say to everyone reading this article?

We're just like any other kids, if we're four; we act like it, and so on with the age. Say hi to the next person you see with Progeria or to any kid who looks different.

Way to go, John! You're our Greatest Hero!