Heartbroken mother is unable to cuddle baby son because rare condition means his skin blisters when he is heldThe condition, Epidermolysis Bullosa means skin and internal body linings blister at the slightest knock or rubThe 18 week old baby's mother and father will never be able to cuddle their sonThe blisters erupt everywhere – including in his throat and eyeballs
15:01 GMT, 8 October 2012
After nine months of pregnancy Daniela Brine could not wait to finally hold her newborn son.
But she has been left heartbroken after little Anthony was diagnosed with a rare skin condition which means she will never be able to cuddle him.
The 18-week-old baby was born with incurable Epidermolysis Bullosa, a genetic condition
where the skin and internal body linings blister at the slightest knock
or rub, causing painful open wounds and blisters.
Doctors had to
teach Daniela and husband Richard Brine how to hold their baby, in a way
that would stop him moving and hurting himself.
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Careful: Doctors had to teach Daniela and husband Richard Brine how to hold their baby, in a way that would stop him moving and hurting himself
Daniela said: 'We sort of learned how to hold him but any touching is very minimal.
'It’s heartbreaking I can’t give my beautiful boy a cuddle.'
The parents have to stick
needles into their baby son to pop his blisters – but little Anthony
often gets them where his parents cannot treat them.
She said: 'If he gets too hot he blisters – if he rubs against himself with his mittens he blisters.
'He blisters all the time – even the mittens we make him wear don’t help completely.
'It depends with how his body is but any rubbing or tension will cause horrible blisters.
Desperate for a cuddle: Anthony shortly after he was born. The parents were devastated when the discovered they could not hold their son without protection
'If we catch them early, we have to stick needles in to pop them.
'He does get them in his throat and inside his eyeballs which we can’t do anything about but feel sorry for him.
'He’s on paracetamol and codeine we have to give him every six hours so his pain level isn’t too high.'
Much to Daniela and husband Richard’s distress, Anthony has a very high risk of developing skin cancer, as condition has knocked up to 40 years off his life expectancy, and there is no known effective treatment.
Family and friends have begun fundraising for charity Debra, which is researching the condition to hopefully find a cure.
Mum-of-two Daniela, from Bicester, Oxfordshire, is living in hope that one day they will find a cure.
She said: 'We as parents will never be able to hug Anthony properly.
'Our older son Shane won’t be able to play with Anthony the way a normal big brother would.
'If Anthony knocks himself the skin peels away from the area and blisters form and just get bigger and bigger until they are popped.
'He’s in constant pain, not just the outside of his body but the inside as well.'
She said blisters even form in Anthony’s throat and mouth making it painful to eat.
Daniela said: 'Anthony always smiles.
Happy little chap: The cheerful little boy's smile keeps his parents going despite the bleak outlook
'He can be in so much pain, but once I’ve sorted him, he just smiles and that’s what keeps us going.”
Anthony has to be held in a special way so he is unable to wriggle and damage his skin.
Even five-year-old son Shane has been taught how to care for his little brother.
Daniela said: 'My eldest is accident prone – he trips over his own feet all the time – I hope that Anthony isn’t the same.
'Shane knows he is not allowed to play with him as a brother.
'It is quite hard on him – we have to give Anthony so much more attention.
'Shane has learned that if Anthony is crying, mummy and daddy will spend a lot of time with him.
'He’s a trooper, like his little brother, he tells all his friends that “my brother is ill.”'
Blisters have to be popped and properly bandaged to prevent infection, and little Anthony has to wear his pyjamas inside out so his skin is not damaged by the seams.
Daniela said Anthony’s hands and feet are the most severely affected areas of his little body, and he has to wear mittens to prevent him injuring himself.
She said: 'The doctors say he will almost definitely get skin cancer and they say he will live about 30 years.
'We just go day by day, we’ve had all the bad news we can get.'
Friends: The little boy cannot play with his favourite toys without his protective mitts on
Richard and Daniela have so far raised more than £1000 for charity Debra – who are working towards finding a cure for little Anthony’s debilitating condition.
Sore to touch: Anthony Brine in hospital shortly after being born with the blisters caused by a gentle touch
Family and friends are selling charity pins, Richard and two pals recently completed the Yorkshire three peaks challenge and a local gym is organising a fancy-dress aerobics session.
Anthony’s genetic condition is so bad that Daniela and Richard would never have any more children.
She said: 'It’s hard not to feel guilty because Anthony’s condition is because of a specific gene me and Richard both have, and it’s an evil gene.
'Richard and I both have it and it’s a one in four chance our child will get it.
“We’ll never have any other children – the illness is so horrible you wouldn’t wish it on your worst enemy.
“There is nothing else we can do. We are just giving Anthony the best life he can.'
Epidermolysis Bullosa affects only one in 50,000 people, and younger sufferers are known as ‘Butterfly Children’ because their skin is said to be as fragile as a butterfly’s wings.
Once her maternity leave ends, Daniela will be quitting her job as a shopworker at Pets At Home so she can become a full-time carer for her little baby.
Richard is currently training as a gas engineer after learning he is going to be made redundant from his current job next year.
She said: 'We are making the best of it.
'We can cope somehow.
'Whenever Anthony is in so much pain and we think he can’t take it anymore, he’ll reach a point and stop and smile.
'That beautiful smile makes the whole world seem better.'
VIDEO: What is Epidermolysis Bullosa (EB)