An Orphan Wins Twice Despite Rare Disease
Dec. 23, 2004 -- -- 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.
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.
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.
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