A MOTHER whose son has skin so delicate he can’t be hugged has urged the community to rally around the charity which supports them.
Anthony Brine, 7, was diagnosed with Epidermolysis Bullosa shortly after he was born in 2012.
The genetic condition leads his skin and internal body linings to blister at the slightest knock or rub, causing painful wounds.
His mum, Daniela, cares for Anthony full-time, and said it was hard to describe how EB had affected their lives, because it was part of every day.
“It has been quite eventful shall we say. We always have a few hiccups on the way each year but we keep as a family and we make sure Anthony is our main priority and gets all the treatment and help he needs,” said Daniela.
“He goes to Great Ormond Street Hospital to get his treatment done. I will always drop everything to take him up there. He is my 24-hour duty. I do everything for him.”
READ AGAIN: Here's the story we wrote about Anthony's heartbreaking story when he was born in 2012
Anthony and his mum Daniela. Picture: Rick Mellis.
EB has no cure or effective treatment and Anthony is expected to live to 40 years old at most.
He also has painful blisters all over his body, including inside his throat, and has a very high chance of developing skin cancer.
Every morning his mum changes his bandages to protect his skin and keep it clean.
Daniela said: “He is in a lot of pain unfortunately, but we try to keep him as happy as we can.”
The family often raises money for Debra, a charity which specialises in supporting people who live with EB.
Last year, Daniela’ husband Richard ran the London Marathon to raise money for Debra, and her 12-year-old son Shane took part in a hike up Snowdon when he was 6.
Now Anthony’s teacher at Five Acres Primary School, Mrs Corton, has organised a fundraising evening for the charity at the Nightingale in Langford Village, Bicester, tonight (September 19) between 8pm and 10.30pm.
Anthony has been a guest at the Duchess of Cornwall's Christmas celebration in the past. Picture supplied by Helen and Douglas House.
Daniela said it was amazing to see the community get together to help her family say thank you to Debra.
She said: “I would never ask for anything and it is nice to see people are so willing to help out. I always say it is the simple things in life that make life better.”
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Daniela said Debra helps her family feel normal, by helping them pay for holidays and providing accommodation in the summer.
She said: “For us holidays are very important as a family: they bring us back together. My husband is self-employed as a gas engineer. He is out all hours of the day trying to bring in money. My other son has not got the illness luckily. But it does impact on our life in general.”
The charity has also helped the family to pay rent and bought specialist equipment for Anthony.
“Anthony will be there and if anyone wants to meet him, say hello to him and find out about what the charity does to help a family like us, I am happy to discuss that. We would be grateful if anyone who wants to come just comes to support us.”
A spokesman for the Nightingale said: “This is a particularly good cause to support. The more people that come along to donate to it the merrier.”
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