NORFOLK, Va. — A little girl in Virginia Beach is getting a life-changing surprise.
She's one of more than 25 million Americans living with a rare disease, according to the Virginia Department of Health.
“These kids are in pain all the time,” said Christina Reese, the mother of Azalyn.
Reese said it's pain caused by epidermolysis bullosa, a rare genetic disease that causes the skin to blister. There’s currently no cure for it.
According to the Dystrophic Epidermolysis Bullosa Research Association of America or DEBRA, 200 children are born in the United States with the disease every year. Reese said it’s a condition her 6-year-old daughter Azalyn has had for years.
“She was about 2 and it just kind of happened," Reese said. "It just started showing up. And as it got hotter, they just started showing up more and more.”
Despite multiple doctor visits, Reese said she struggled to find information on the disease until she came across EBLifeStyle Inc. Hodges Caldwell Jr., the founder of the organization, suffers from the same condition and knows the challenges that come with it.
“Having this condition makes everyday activities extremely difficult like bathing, walking," Caldwell said. "Even eating.”
That’s why he started his nonprofit, which gives away lightweight mobility scooters to young people with epidermolysis bullosa. To raise awareness of Rare Disease Day, Azalyn received one on Tuesday.
“When we give these young kids a scooter, you see an instant change,” Caldwell said.
Reese said with this scooter, she feels comfortable sending her daughter back to school.
“This little scooter gives her independence," Reese said. "She’s never going to have to depend on anybody for opening a door. Or she doesn’t have to tell anybody that she can’t walk.”
She hopes by sharing her daughter’s story, more people will rally to support those living with epidermolysis bullosa.
“I need you guys to get behind us and use your voice," she said. "And get these superheroes recognition.”