Girl has skin so fragile it tears at every touch

SINGAPORE - A little girl from Phoenix, Arizone, has such a debilitating condition which means she can't be hugged or cuddled. Even the slightest touch from her loving parents can cause her skin to tear and create painful blisters.

She suffers from a rare condition called "Butterfly Disease" - which means that like a butterfly, her skin is so fragile that a touch or caress can break it.

Three-year-old Lizzy Hendrickson's condition is so rare, that only one of out every 20,000 live babies born in the US have it, according to the Dystrophic Epidermolysis Bullosa Research Association of America.

It's scientific name is Epidermolysis Bullosa (EB) Simplex - which is a disorder resulting from mutations in the genes encoding keratin 5 or keratin 14.

Erosions and blisters form in response to minor injury or friction, such as rubbing or scratching, and can lead to infections, dehydration, and other medical problems.

When Lizzy was born in May 2009, her parents immediately knew there was something not right with the child.

She is Rob and Kristin Hendrickson's second daughter. Their first, Katie, is a happy and healthy toddler who enjoys running around.

The couple had no reason to believe their second daughter would turn out different, but when Lizzy emerged from her mother's womb, they got a huge shock when they saw that her legs were red and bloody.

Where the skin had not blistered, Lizzy's legs were "bright pink", her father said. "You could kind of see through them. You could kind of see the muscle underneath," Rob told abc15.com.

"Usually their first blistering experience is that trip down the birth canal," said Dr. Ronald Hansen, chief of dermatology at Phoenix Children's Hospital. Lizzy was quickly transferred to the children's hospital for specialist treatment after her birth.

It was weeks before the couple received a formal diagnosis after doctors ordered a spinal tap. Originally, doctors suspected a viral or bacterial infection, before concluding it was the "Butterfly Disease" when a simple rub of a pencil eraser tore the skin.

EB can occur in every racial and ethnic group, and affects both sexes equally. According to USA Today, no one in her family carried the EB gene - which means that her EB was the result of a random gene mutation.

Severe forms of EB cause patients to live with constant pain and scarring - some so severe that even the tongue and throat are too sensitive to swallow food.

The worst forms of EB lead to eventual disfigurement, disability and often early death. There is no cure, and research is on-going.

Luckily for the Henricksons, Lizzy's form of EB is relatively mild. Nevertheless, she still can't do simple tasks without putting herself at risk of blisters and infections.

She was be showered as the pressure of falling water can hurt her, and changing her diapers when she was an infant was a nightmare for her parents as a slight wiggle from Lizzy could tear her skin.

"Frankly we were terrified of her because we didn't know if just picking her up would hurt her," her mother said.

Her legs especially bear the brunt of her condition. She has to wear bandages around her legs and cannot run and play with her friends as a fall or push could spell disaster.

Despite all her parents' precautions, Lizzy still develops large blisters regularly all across her body that needs popping and ice-packs to relieve the pain.

"There's nothing that I can do, as a mother, to make her pain go away," she told 12 News Phoenix.

Today, Lizzy can wear normal clothes, but zipper or other hard fasteners are out of the question. Sheis also able to keep her arms bandage free.

But more than her physical scars, her emotional scars are what her parents have sleepless nights about. They continue to tell her she's beautiful, and hope that one day there will be a cure.

Kristin is a part time nurse at Banner Good Samaritan Medical Center and Rob a teacher at Mountain Pointe High School. The health-care coverage from their jobs help them manage Lizzy's medical expenses, but raising funds for research into the condition is another matter.

There are only four dedicated EB clinics in the US, and the disease is so rare that even raising awareness of the condition is an uphill struggle.

The couple have set up a Facebook page in Lizzy's name in hope that it will help in their search for a cure for children like their daughter.

Those interested in learning more about the disease can visit the page at facebook.com/lizzyh.eb or www.debra.org.

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