Pioneering Surgery For Rare Skin Disease

When raising kids, bumps and bruises are a part of every day life. But imagine if the most minor fall or scrape caused your child's skin to blister and perhaps even peel right off.

That's a daily reality for the Liao family of Clarksburg, N.J.

Theresa Liao and her husband have four sons, two of whom have the rare skin disease known as epidermolysis bullosa, or EB.

Three-year-old Jacob and 18-month-old Nate both have the most severe form of the disease.

However, Nate recently underwent a risky experimental procedure -- the first of its kind -- that has the potential to help his condition.

If it's successful, doctors say, the implications could be huge for EB sufferers, and Jacob and Nate may be able to live normal lives.

As of now, there's no way to treat children with EB, which usually appears shortly after birth.

Parents try to reduce the potential for blisters, wounds and infection by bandaging their children from the neck down every single day.

Despite these precautions, people with EB often die young from an aggressive form of skin cancer.

Theresa refuses to accept that as her sons' fate.

Since Jacob was born with EB in 2004, she's been battling every day to find a treatment to help them.

At the moment, the Liaos are awaiting the results of a risky, experimental Oct. 19 operation at the University of Minnesota Children's Hospital, in which Nate was given stem cells and bone marrow from his healthy brother, Julian.

Doctors say they should know soon whether the procedure is helping to re-grow the "hooks" and "glue" that connect skin to muscle in healthy people.

If the procedure is successful, Theresa plans to donate bone marrow to her son Jacob, hoping for a similar outcome.

Theresa spoke withThe Early Show co-anchor Harry Smith Tuesday, along with biologist and transplant surgeon Dr. John Wagner, who performed the surgery on Nate, who's still in isolation to protect him from infection.

Theresa's sons Julian, 2, and Jacob joined them.

The wounds from EB, she told Smith, "are constant. They heal, but then (skin) just breaks down."

But, she says, she wouldn't, and won't be deterred.

"In this day and age," she said, "there has to be something. There's so many things going on, research, so many things all across the country, all across the world that, when someone tells you, 'You have to just take this and go home,' that's not true. It takes a lot of research and a lot of work and a lot of diligence, but that's what moms do."

Wagner said he met Theresa in 2004 in New York when giving a presentation. She "came up to me and basically asked me to do what I could to save her child from this life threatening, horrible disease."

He confirmed Smith's statement that Theresa "basically thrust the child into your arms and said, 'You've got to help me save my kid.' "

At that point, said Wagner, he went back to the University of Minnesota and joined with researchers at Columbia University in New York to come up with a lab model that proved stem cell therapies could "cure this terrible disease."

That and other work led to the operation on Nate.

Wagner says doctors will take Nate back to the O-R in ten days to take a piece of his skin and put it under an electron microscope for an indication of whether and how well the procedure worked -- checking for the microscopic connectors, of skin to muscle, that EB sufferers lack.

Genetic testing could "absolutely" find EB ahead of time, Wagner says.

And Theresa vows to keep fighting for her sons, saying, "I don't take 'No' (for an answer)."

"She's not!" Wagner confirmed.

For more on epidermolysis bullosa, from the National Institutes of Health, click here.