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Monday, September 26, 2011

The little boy who can never be hugged…

 


The little boy who can never be hugged…
as rare condition means he will break out in blisters
By Claire Bates
A six-year-old suffers from a rare condition which makes his skin break out
in sores and blisters at the slightest touch.
Rhys Williams, was born with the incurable Epidermolysis Bullosa -
a genetic disorder which can prove fatal.
Despite living with the painful condition, Rhys has refused to let it get him down and has been
described by his parents as their 'little hero'.
The youngster from Bolton, is one of 5,000 sufferers in Britain.
His parents Tanya Moores, 28, and Mark Williams, 44, were devastated
when he was diagnosed shortly after he was born.
Tanya, a full-time carer, had a normal pregnancy and never suspected anything was wrong
until Rhys was born in 2005 at the Royal Bolton Hospital.
He had no skin on his feet - but doctors believed it was caused by an infection.
But they then diagnosed the condition after consulting colleagues at a specialist centre in Birmingham.
It means that he has to use ointment every day and is prone to infections if his wounds are not cleaned properly. 
Unfortunately Rhys has a more severe form which means he has internal blistering that
affects the inner body linings such as the mouth and oesophagus.
This makes it difficult for him to eat and means he is often plague by painful constipation.
Despite his health problems, he is doing well at primary school, which has installed a lift
and ramps to help Rhys get around in a wheelchair.
Mother Tanya said: 'It was really hard when he was a baby because it was such a shock to us.
'He's really brave and gets on with it. He has so much to put up with and it upsets us all the time -
 but he doesn't let it get him down.
'We just want to find a cure for EB - that's our main wish for Rhys so we can put him out of pain.
It's a horrible condition.'



*Painful: Epidermolysis Bullosa is an incurable inherited condition*
Routine: Rhys must have ointment on his skin every day before dressings are applied
The family extended their home with a wet room and extra bedroom to make it easier
to clean Rhys's blistered skin and then apply fresh dressings.
They were helped with funds from the charity DebRA.
The football fan has also met some of his favourite player from Bolton Wanderers and Liverpool.
The family are supporting the Epidermolysis Bullosa charity.
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