Poppy’s rare illness means her skin falls off at slightest touch[SWNS]Poppy, who has become known as the “Butterly Girl”, has to have her wounds dressed twice daily, but parents Kim and Paul cannot comfort her with hugs in case it causes more sores.
Yesterday the couple from Stokeon- Trent, Staffordshire, said that despite living in almost constant pain Poppy never stops smiling.
She is one of just 5,000 in the UK with the disorder.
Project buyer Paul, 38, said: “We knew a bit about the disease because a lot of Kim’s family members suffered from it, but it had always been very mild.
“Unfortunately, when Poppy was born she got it quite severely.
“We have to be careful with her, especially when she falls over, as her skin is very fragile and she can blister within minutes, but we want to make sure she leads as normal a life as possible.
We have to be careful with her, especially when she falls over, as her skin is very fragile and she can blister within minutes
"That’s very hard when she’s wanting a hug and you can’t just give her a big squeeze and tell her it’s going to be OK.”
Paul and Kim, who also have a seven-year-old son, Jacob, spend 30 minutes applying special creams, and bandage the toddler twice every day to make sure her skin is protected.
Health visitor Kim, 30, added: “She is at the point that she is falling over all the time and she has always got a few scrapes so she is in pain.
“I have a mild form of epidermolysis bullosa. It affects only my nails, my skin is fine, but Poppy is suffering.
“When she gets older, she will learn how to manage her condition.”
The couple will run the Bupa London 10,000 race next month in aid of Debra, the charity for people with the condition.
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