HEARTBROKEN Kirsty Fletcher cannot cuddle her daughter because the five-year-old has such fragile skin.
Portia suffers horrific burns and tears if she is touched due a rare genetic disorder known as “butterfly skin”.
Five-year-old Portia Fletcher has ‘butterfly skin’[/caption]
Portia suffers burns and tears if she is touched[/caption]
But she is all set to start school in October.
Mum-of-four Kirsty, 28, said: “It is agonising for me not to be able to comfort her with a hug when she’s ill.
“Even when she was a baby she was passed to people on a silk pillow.
“You can’t cause friction on her skin.
“So if she’s going to fall you have to let her because if you catch her you could pull the skin off her arm.
“But she wants to live as much of a normal life as possible.
“She’s an absolute fighter.”
The disorder, Epidermolysis Bullosa, causes a lack of protein collagen which knits skin together.
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Kirsty, of Flamborough, East Yorks, said: “There is no cure yet but lots of research. Hopefully there will be one eventually.”
Kirsty added: “I was told three times not to expect her to make it through in hospital but she’s still here.
“I’m determined not to wrap her in cotton wool.”
Portia’s mum Kirsty says ‘it is agonising’ not to be able to cuddle her[/caption]
‘When she was a baby she was passed to people on a silk pillow’, Kirsty adds[/caption]
Portia’s leg wound caused by the disorder Epidermolysis Bullosa[/caption]
‘Absolute fighter’ Portia ‘wants to live as much of a normal life as possible’ [/caption]
Portia’s mum ‘was told three times not to expect her to make it through in hospital’[/caption]
Portia with her baby brother, mum Kirsty and grandma Dorothy[/caption]
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