PHOENIX - It's safe to say it's a condition no one wants their kids to have. It makes an infant's skin as delicate as a butterfly's wing, meaning just about anything that touches the child will cause harm.
The disorder, called Epidermolysis Bullosa, or EB, has no cure, and is so rare that Phoenix Children's Hospital sees it maybe once every two to three years. There is a two-month-old infant in the West Valley who is affected by the condition, and the diagnosis is heartbreaking for the parents.
"Putting clothes on her is painful," said Erin Sykes' father, Chris Sykes. "The clothes that she has to wear have to be turned inside out, because the seams will tear her skin."
Erin has the most severe form of the disorder, with about one in 500,000 babies born with that form of EB. Originally, Erin's father and mother, Lindsey Uber-Sykes, thought Erin's blisters came from her sucking on her fingers. They found out about the disorder at Phoenix Children's Hospital, one of five hospitals in the country that treat the disorder.
Chris and Lindsey said bath time with Erin can take up to four hours, and Chris said he is afraid to hold his baby daughter.
The long-term outlook isn't promising either, for 87% of infants with Erin's condition pass away within the first year. Both Chris and Lindsey, however, said they are leaning on each other, as well as their three other daughters, to get through each day.
"The positivity that she brings to us, and her courage and her bravery and her strength, and what she has taught our family, " said Chris."But the 87% weighs heavy on us on a daily basis."
With treatment of Erin's disorder also comes cost, and the family is hoping to get all of their daughters genetically tested, which they say will cost in the thousands.
The family has set up a GoFundMe account to try and cover major costs:
Erin Syke's GoFundMe account