A MUM has spoken of her heartbreak that she will never be able to cuddle her baby son.
Minutes after baby Anthony Brine was born his delicate skin started to peel and bleed as he was cleaned by medical staff at Banbury’s Horton Hospital.
Within days his parents Daniela and Richard were given the devastating news their tiny tot had been diagnosed with Epidermolysis Bullosa, EB, a genetic condition where the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.
The condition has no cure or effective treatment and will limit 18-week-old Anthony’s life expectancy by up to 40 years.
He has a very high chance of developing skin cancer.
Now family and friends have started fundraising for charity Debra, which is researching the condition to find a cure.
Mrs Brine, 24, of Ambrosden, near Bicester, mum to five-year-old son Shane who does not have the condition, 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 form in Anthony’s throat and mouth making it painful to eat, and in his eyes.
Mrs Brine said: “Anthony always smiles.
“He can be in so much pain, but once I’ve sorted him, he just smiles and that’s what keeps us going.”
Before they could take him home from hospital the couple had to be trained to hold him in a special way so he could not wriggle and damage his skin.
They were also taught to pop any blisters and how to bandage them to prevent infection.
Baby Anthony wears sleep suits inside out so the seam dosen’t damage his skin, and mittens to try and prevent him damaging himself.
Mrs Brine said Anthony’s hands and feet were affected the most, but as he gets older and starts moving around more of his body would have to be bandaged.
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.”
The couple were dealt a second blow weeks after Anthony was diagnosed when Mr Brine, a Lance Corporal with Bicester based 23 Pioneer Regiment, was told he would be made redundant next year as the regiment is being disbanded.
He is now re-training to be a gas engineer.
So far the couple have raised more than £1,000 for the charity after Mr Brine and two friends completed the Yorkshire three peaks challenge.
- On Sunday, October 28, from 11am, Evolve Health and Fitness is holding a fundraising cheerobics class to raise cash for the Debra charity. To take part, call the Murdock Road gym on 01869 323337.