UK - 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 Richard Brine how to hold their baby, in a way that would stop him moving and hurting himself.
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 says: "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."
"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," she adds.
"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 every six hours, so his pain level isn’t too high."
Much to Daniela and 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.
Mum-of-two Daniela, from Bicester, Oxfordshire, says: "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."
Anthony’s genetic condition is so bad that Daniela and Richard would never have any more children.
Daniela says: '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. It’s a one in four chance our child will get it.
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.
Daniela says: "We are making the best of it. Whenever Anthony is in so much pain and we think he can’t take it anymore, he’ll reach a point and smile. That beautiful smile makes the whole world seem better."