Butterfly Children: a rare and horrible disease
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Posted 8:59 PM 2/21/2012 : Butterfly Children: a rare and horrible disease
We now have a link where you can learn more about Brystal's story by clicking here.
TUCSON - It could be the worst disease you'll ever see in children and it's rare.
One in 50,000 kids are diagnosed with it.
With this genetic disorder, the baby's skin is so sensitive and fragile it blisters and tears under the slightest pressure.
A young couple contacted Kristi's Kids to raise awareness because their baby girl has it, and they're desperate to find a cure.
She was born without skin at the ankle on her left leg.
Brystal was born November 10th of last year and was rushed to intensive care.
"We had all the doctors come in and out of the room all day," says Brayce, Brystal's mother.
Soon she was transferred to Phoenix Children's Hospital.
"They told us that it could be Epidermolysis Bullosa."
Also referred to as E.B. Kids who have E.B. are called butterfly children because their skin is extremely fragile like butterfly wings. It is a devastating diagnosis for parents like Brendan and Brayce.
"I just started crying because it's so much work. She was 8 weeks at the time. Nobody should have to go through all of that," says Brayce.
"And she was getting blisters on her face, because she was scratching her face without the mittens," she says. "And then her fingers blistered up, so now there's Vaseline gauze and then regular gauze."
They can't use any kind of adhesive or tape on Brystal because it'll damage her skin.
And if they don't use the gauze wrap?
"The end result where her hand will fuse together. Like a ball. From the blisters her hands will fuse so her whole hand will look like a mitten," her father explains.
Every other day Bystal's mom and dad team-up to wrap her little hands and legs.
"You'll blink and there will be a blister."
Brendan and Brayce want to raise awareness. Right now, there's no cure.
"Picking her up gave her blisters on her sides. She had a huge one in her arm pit. And we have to pop them, when we notice them," says Brayce.
A heartbreaking situation that needs research.
"There's nothing we can do for her and she's in all this pain."
If you'd like to learn more about Butterfly Children click here.
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