Every parent has to walk the line between being protective of their child and letting them be a kid. -- Michele Disco

Michele Disco is a passionate advocate for her son Miles and others living with Epidermolysis Bullosa (EB), a rare genetic condition that causes extremely fragile skin that blisters from friction. She organized two gatherings and photoshoot with Postiive Exposure and the EB community: one with the EB support group's New York chapter in Greenwich village and another with Philadelphia-area familes during the American Society of Human Genetics conference. MIchele continued her involvement with PE as an intern.

So before your son was born you had some idea he might have EB?

Michele: My husband and I had gone to a genetic counselor before our son was born. We had a 50/50 chance of having a child with Epidermolysis Bullosa. I remember the meeting because it’s obvious the counselor really loved what she was doing.

Did knowing your child might be affected help you prepare for being Miles' mom?

We knew there was a good chance, so it wasn’t a surprise. But I didn’t know what it would be like raising a child with it. It was still a big adjustment after Miles was born.

Once soon after his birth I remember seeing a little kid laughing and playing with her dad. At this point Miles had a lot of blisters between his fingers; we were trying to wrap them. He had blisters on the palm of his hand where the fingernails dig in. I started crying because this girl had these perfect little fingers and her parents weren’t even aware of it. It’s a normal thing that you just expect but that I had to learn not to expect.

And yet you seem to have a very normal attitude about your son, expecting him to take risks and play like any other kid.

Miles has met a ton of kids who also have EB. And adults. There’s good information on the internet. We have a pediatric dermatologist who sees around 30 EB patients on a regular basis, so all this support makes it feel manageable.

Is that why you got involved with Debra (The Dystrophic Epidermolysis Bullosa Research Association of America)?

We actually helped start our own chapter…a New York area support group. We throw holiday parties with kids from every family in the region while raising money for research. To me, the most important thing is for Miles to be around other kids that have it.

How does your son understand his condition?

Miles understands that when he was born he was missing one of proteins that binds skin together. Other kids will ask him what it is and he’ll say, “I have EB; I was born with it. My skin is just that way. “

So he’s not afraid of participating in certain activities because he might get a blister?

No, but I have a little bit of that in my head. He wants to ice skate; I know that the top of the skates are going to cause blisters. But I’ll try and get padding and give him a chance. Because his case is milder than some people'sI can deal with it this way. I want him to do anything that he wants to do. If he sees that it’s a problem, then he can decide not to. I don’t want to be the one saying no.

Do you have any concerns about Miles’ condition holding him back?

I don’t think he's going to have too many problems in school because he’s really outgoing---he’s good at expressing how he feels

And I’ll do what I have to do. I write a letter ever year to explain to parents and kids what it is. Once they know what it is, it pretty much becomes a non issue.

Now that you’re going to be a genetic counselor and have contact with families affected by other genetic conditions, what are the similarities see between their experiences and yours?

I think that there’s a shock period where you’re adjusting--more than one moment, not just one moment. You can’t really imagine every little ramification until you’re living it. You may know there’s a chance of having a kid with EB, but that’s different than actually trying to pop blisters on an infant who’s wiggling around and crying. That’s an adjustment, no matter what.

As a mom of an affected child, how do you feel about your training program?

I feel like program is very sensitive to the perspectives of people with genetic conditions and their families. I’m trying to soak up all the teachings I can so I can use them as a counselor. The idea of seeing a person as a person first is hugely important to me as a parent and something I want to practice as a professional.

Is that why you gravitated towards Positive Exposure’s imagery?

Yes. The images from I was exposed to in class definitely made me think. For example, in one of my textbooks there was a picture of a child with Cri du Chat Syndrome, and the child was looking directly at the camera. The way it was shot, the photo was meant to depict a representative of a condition, not the child's personality.. But I could see that there was more to this kid. It really got to me because it made me ask, “What if this were my child?” Miles has actually been that kid in the medical photographs.

I’ve also seen in videos the way parents hold their children who are being videotaped during treatment, and I identify with the parents holding their kids.

What does Positive Exposure mean to you?

I think PE captures a really beautiful part of life. There are lots of people who don't see themselves in the image of beauty that makes it to billboards, not only those with genetic conditions. People with genetic conditions might be quick to categorize themselves as different from those whose beauty is represented on billboards, and think "I can't do that because of my condition." But for them, and for everyone, Positive Exposure tells them "you can."