NOVA

Being in the hospital isn't scary to me. Having a certain new problem isn't scary to me anymore 'cause it's happened so many times. I don't know, my blood just does not like me very much, I guess. Your red cells are supposed to be round and have oxygen in them. Mine are half moon shaped, sickle shaped, which is why it's called Sickle Cell. So I don't get the same amount of oxygen. I always say like oil change, you know, you drain the dirty out and put the clean in. So he just needs a tuneup every four to six weeks. Yeah, uh-huh yeah. He used to tell me don't cry, Nana. Why are you crying? I said, you know, love you baby. He goes, don't worry about it. He says, if I lose my life, he goes, you'll see me again. I thought, this child has more strength and faith than I do. It's often called the first molecular disease. It's caused by a single change in the DNA sequence. It's the letter A changed to a letter T. -

Interviewer

That's it? -

Matt

That's it. That mutation causes a kink in the protein that prevents it from folding properly. If your folding structure of a protein is disrupted, now that protein can't function. -

Delores

David can go from crazy teenager joking, jumping around, to a fetal position on his knees. It's like pulsing...this hurts... you're having a sickle cell crisis. I can have like a little pain crisis where it really doesn't count. And then I can have something really bad, but I'm not just going to not play basketball. You can't just not play basketball. -

Interviewer

Do you think you want to have kids? I have too many siblings for that. The answer is probably going to change, but for now, probably not. No, I'm not crazy. -

Interviewer

They're saying maybe one day with CRISPR they could go in and change the gene in the embryo. So that the kid, when it's born, doesn't have sickle cell. I guess that's kind of cool that they're thinking that it can do that in the future. But I think that would be up to the kid later. -

Interviewer

What do you mean? There's a lot of that I learned having sickle cell, just because I had it. I learned patience with everyone. I learned just to be positive. -

Interviewer

So you don't wish that you never had it? I don't wish that I never had it, no. I don't think I'd be me if I didn't have sickle cell.