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.
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.”
“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.
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.”