Barbara Cooper (left) and her mother, Jody Houston, talk about Barbara living with a rare genetic condition called progeria, which speeds up her body’s aging process. While most people with progeria do not live past 13, at the time of their interview, Barbara was 31 years old.
Originally aired December 5, 2008, on NPR’s Morning Edition.
Barbara Cooper (BC) and Jody Houston (JH)
JH: Can you tell us about your genetic disorder?
BC: Yes, it’s called Progeria, which is a premature aging disorder. And it’s a rapid aging process. They skip puberty, everything else. Um, and it’s a very short life expectancy. But, I do not fit all the categories…I’m tall, I have hair, I do not have heart problems, and so, I’m very lucky.
JH: That’s true. Can you tell me what it was like when you lost your vision?
BC: It really took me a long time to get used to it. But what little vision I have left… it’s enough to get me in trouble. At least I have that for right now.
JH: We talked the other about how you remember things. And that you remember your reflection. And that you will always be young…
BC: Yes…
JH: …in your mind.
BC: Always.
JH: And I was so excited to hear that, because now I’ll be forever young in your eyes.
BC: Yes. Definitely.
JH: Well, I have some of the best memories of you as a tiny, little girl. You were about three years old and you wanted a pair of skates more than anything in the world. So, we got you a pair of hot-pink roller skates. And, you started for the door, and I said, ’No, you have to skate in the house. I don’t want you to get hurt’. So you learned to roller skate on deep shag carpet. And then one day, you put your hands on your hips and you said, ’You cannot keep me in this house forever.’ That moment opened up my eyes, really. I knew that you needed to go out there and skin your knees. And, it’s been a ride hadn’t it?
BC: A wild ride. You know, I can’t remember the last time I had a day where I felt good. But it doesn’t do me any good to sit around and complain about it. And, you, you know when I’m having a hard day, and it’s just, take it minute by minute.
JH: Uh-huh. Um, you know, children aren’t supposed to die before their parents do.
BC: Correct
JH: And, heaven forbid that you go before I do, but if you did, how would you want me to remember you?
BC: That I did everything that I’ve ever wanted to do. And, that you made that possible. Out of all of my surgeries, you have always been there when I woke up. You’re the first person I’ve seen. I never had to worry, because you were always going to be there holding my hand and talking to me. And, I’ve enjoyed every moment with you, and you’ve been my best friend.
JH: Wow, I love you.
Freedom School students Deborah Carr, Stephanie Hoze, Teresa Banks, Linda Ward, Glenda Funchess, and Don Denard came to StoryCorps to reflect on their memories from 1964.
