Butterfly Kids: When Skin Blisters Can Kill

Brandon was slow to walk -- "because he associated walking with falling and causing a boo boo," said Joseph, but otherwise is doing just fine.

"He can wake up in the morning with five or six blisters, depending on what his body went through the day before, and throughout the day if he has injuries, we have to pop those," she said.

Epidermolysis Bullosa Can Be Fatal

EB can be devastating to a growing child, causing the fingers and toes to fuse and leaving severe deformities like so-called "mitten hands." Chronic anemia reduces energy and growth is retarded.

"Imagine it like a burn patient with open wounds," said Joseph. "The body is in a constant state of healing. Your body is depleted of calories and low on iron and there are many other aspects of the body that come into play."

Parents must always guard for infection with proper bandaging and antibiotic creams.

"You need to protect from trauma, but not so such that you are retarding growth," she said. "The body and skin have to be able to move, breathe and grow hard with the baby crawling or it causes more problems."

Though Brandon is a "bit of a fearful explorer," he now plays soccer and baseball, rides his bike , loves Legos and has a lot of determination, according to his mother. Because water is so forgiving, he loves swimming.

His mother now is executive vice president of the EB Medical Research Foundation, which funds pioneering research at Stanford University, UCLA and the University of Southern California.

The latest Stanford research is focused on gene therapy, sampling an EB patient's skin cells and inserting the correct genes in the lab, then grafting the corrected skin back on. Clinical trials on adults will start soon.

Joseph finds support from other families with butterfly children -- how to wrap wounds, creams and salts and clothing. "What one woman tried in Michigan gets shared with families in LA," she said.

"I like to focus on the positive," she said. "We don't focus on what he can't do. We don't write a script for him. Right now, he's an amazing kid and has a great spirit about him. He has literally had to form a thick skin about what he has."

"Kids will look at him and say, 'Oh, that's gross,' but I tell him not everyone has special skin, and everyone has something different about them," she said. "The important thing is that he is not afraid of what he has."

"People are going to be curious," said Joseph, "but hopefully, not cruel."

In the meantime, Jackson Silver's parents said the Senate hearing was a "great step."

"With the support of the government and the private sector, we can cure this disease and give all the kids with it a chance at healthy and pain free lives," said Alexander Silver. "This can and must be done."

Learn more about clinical research on EB at Stanford University.

ABC News's Natalie Gewargis contributed to this report.

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