SACRAMENTO, CA - Her parents call her strong and tough, a little fighter. Steve and Becky Pop of Sacramento are doing everything they can to help their beautiful 7-month-old daughter, Elle. SLIDESHOW: Elle
Shortly after her birth, Elle was diagnosed with a rare and extremely painful disorder that causes her skin to blister and bleed, even come off at the slightest friction. The condition makes it difficult and painful to even eat or breathe for the little girl.
"Epidermolysis bullosa, two words that are very difficult for me to say, even to this day", said Elle's father Steve. "It's very important that people know so there's more research, so that other kids do not suffer, and that they find a cure. That's the goal."
Elle is one of 20,000 children in the U.S. who suffer from the disease. Many do not survive beyond the first year of life.
"They're known as 'butterfly children,'" said Elle's mother Becky, "because their skin is so fragile, just like a butterfly's wing."
Elle recently underwent treatment at Stanford University Hospital where doctors inserted a feeding tube. Much of her body is wrapped in bandages. Simple tasks like diapering and bathing can take hours. She is given morphine every four hours to help ease her pain.
"It's just continuous care with her," Elle's dad said.
Elle has been accepted to a groundbreaking clinical trial of a stem cell transplant at the University of Minnesota Medical Center. The family is now making plans to travel to Minnesota in early August, and doctors have told them to prepare to stay for up four months.
A Facebook page for Elle and several community fundraisers are working to raise money to help the Pop family with expenses. One of them, "Day in the Park for Baby Elle," is Sunday, July 25, from 10 a.m. to 3 p.m. at Village Park in Old Fair Oaks.
Tax deductible donations can also be sent to "Baby Elle Fund," 9280 Central Avenue, Orangevale, CA 95662.
The Pops say they are humbled by the support.
"There really is a community effort for one little girl, our litt'e girl", said Steve. "It's just amazing how many good people there really are, and we've met a lot of them."
By Jennifer Smith, Jsmith@news10.net