Every day a brave three-year-old girl deals with painful blisters and sores from a rare condition that makes her skin as fragile as a butterfly's wings. INSIDE EDITION paid a visit to the family.
They call her the Butterfly Girl.
Little Lizzy Hendrickson was born with an extremely rare disease that makes her skin as fragile as the wing of a butterfly. The slightest bump, the most minor physical contact can tear her skin or make this sweet three-year-old break out in terrible blisters.
Watch video of our interview with Lizzy and her family here.
Kristin and Rob Hendrickson change her dressings just about every day at their home in Phoenix.
Kristin told INSIDE EDITION, "It's very painful for her."
Lizzy has to wear special thigh-to-foot bandages all the time. It's a gruelling process that takes as much as two hours and exacts a toll on Lizzy and her parents.
"I've cried myself to sleep many, many, many, many, many nights," said Krsitin.
Her father said, "It's awful to see her in this state."
Lizzy's condition is so rare that when she was born, doctors were baffled by the marks that were already forming on her skin.
Her big sister, Katie had no symptoms of anything similar, nor did Kristin and Rob.
Lizzy came to be diagnosed with an incurable and sometimes fatal condition called Epidermolysis Bullosa.
Kristin said, "We had specialists walking in to the hospital just to see Lizzy because they had never seen it before. That's how rare it is."
Dr. Ronald Hansen is head of pediatric dermatology at Phoenix Children's Hospital. He told INSIDE EDITION, "She'll probably never have a day in her life that she doesn't have some blisters."
But you only have to spend a few minutes with Lizzy to see she's full of life despite her medical issues. She attends pre-school and loves to romp around the playground with her sister.
Although her skin may be frail, her spirit is anything but.
