An Orphan Wins Twice Despite Rare Disease

The last two years have been a roller-coaster ride for 10-year-old Genia Plummer.

In the spring of 2003, the only world she knew was a Siberian orphanage straight out of Dickens, where she was likely to remain until she was grown.

That summer, she was sent to Charlotte, N.C., for four weeks, to live with an American family as sort of a trial run to adoption.

Sweet and fun-loving, she fit right in with her hosts, Terri and David Young, and their 8-year-old daughter, Amanda. "Everybody that met her fell in love with her," Terri Young said.

But then the Youngs realized Genia had a medical problem, and her fate was again in question.

"We noticed she had blisters ... it almost looked like a burn victim. And we didn't understand what it was," said Terri.

Learning About EB

When the Youngs took Genia to a dermatologist, they learned she had a rare genetic skin disease called epidermolysis bullosa.

People with EB are born with skin that is missing certain proteins. As a result, they develop serious blisters and sores from the least bit of friction or the slightest abrasion.

EB is very rare, affecting only two of 100,000 Americans. EB sufferers can suffer deformities of the hands and feet. Many with the condition require a daily regimen of wound care -- lasting as long as three to four hours -- to ward off infection.

There is no cure for EB. The only treatment is meticulous nursing care of the skin.

And at its most serious, EB can be fatal. The dermatologist told the Youngs that was the type Genia had.

The Youngs felt emotionally unprepared to adopt Genia. Just five years before, their oldest daughter, Jennifer -- then only 5 -- died in an elevator accident during a family vacation.

Amanda, their other daughter, had seen her sister die, and the Youngs felt they couldn't expose Amanda to that sort of tragedy again.

Kindred Spirits

Still, the Youngs were determined to do whatever they could for Genia. They reached out to DebRA, the national advocacy and support group for people with EB.

But when they made contact with DebRA, Madeline Weiner, a nurse-educator, told them Genia's EB was actually a milder form.

The Youngs also met Stacey Plummer, who runs a support group in North Carolina. Plummer has EB, and so does her daughter, Sydney.

On July 4, 2003, Plummer drove to the Youngs' house and introduced herself to Genia.

She says the first time met the little girl, she felt a connection. Plummer said she showed Genia her skin, to tell the little girl, "It's OK to be different."

Genia "had never seen anyone with EB before," Plummer said.

Plummer also learned the Youngs had decided not to adopt Genia. The situation weighed heavily on Plummer and her husband, Trent. Without anyone to adopt her, Genia would probably go back to her orphanage, where there would be no one to treat her disease.

"I can only imagine if it were Sydney. I couldn't imagine her being alone with EB," Trent Plummer said.

Just hours after the Plummers visited the Youngs, they called and said they wanted to adopt Genia.

"Who better to take care of her? She would grow up in a house with someone who knew each stage of her life, what it was going to be like," Stacey Plummer said.

The plan was in place, but the Youngs and the Plummers still sent Genia back to her Siberian orphanage. There was always the possibility that the adoption might fall through and they feared disappointing Genia.

Raising Hopes and Funds

Stacey Plummer felt she understood all too well how EB could affect Genia. EB is not only physically painful, but emotionally scarring. She and her brother, Josh, inherited the disease from their father. When she was growing up, neighbors shunned them, fearing their condition was contagious. (It is not.)

"You don't feel wanted," Stacey said. "Even when you're a little girl, you still feel inside that there's something wrong. That you're not perfect."

One of the obstacles was that it would cost $30,000 to adopt Genia. The Plummers didn't have that money, but the Youngs volunteered to pitch in. The Youngs circulated a fund-raising letter among friends, and the contributions poured in.

A Happy Change

On Christmas Eve, Genia was finally told the Plummers had plans to adopt her. Three months later, the Plummers went to Siberia to retrieve her.

Genia says she didn't really believe they were coming until she actually saw them. Today, it is one of her fondest memories.

And more than six months after her arrival in America, Genia seems to have adapted very well.

"She's made the perfect extension of our family. I can't think of a better sister for Sydney," Stacey said.

Those who know Stacey and Trent Plummer marvel at what they've taken on, how they have profoundly changed the course of a little girl's life.

"I am in awe of Stacey. I was concerned that Stacey would be overwhelmed by having two children with EB. And she has proven me wrong," said DebRA's Weiner.

"Trent is the best dad we've ever seen," said Terri Young. "He does not have the disease, but he takes care of three women who have it. He's awesome … and he's great with those kids."

If you would like to learn more about Epidermolysis Bullosa, these links may be helpful:

The Dystrophic Epidermolysis Bullosa Research Association of America:

National Epidermolysis Bullosa Registry at the University of North Carolina at Chapel Hill :