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Miracle daughter ‘is just like any girl,’ says mum

Amy Bingham

Amy Bingham

Bubbly Amy Bingham is like any other 12-year-old girl - she loves horses, going to Guides, music and hanging out with friends.

But unlike her school pals Amy must spend hours each day covering herself in thick grease to moisturise her skin because she suffers from Netherton’s Syndrome, a rare and incurable skin disease that affects only 70 people in the UK alone.

Amy’s skin is constantly dry and red, her hair does not grow properly and she suffers from many allergies - but mum Lisa stressed Amy is just like any other girl.

“She copes very well and doesn’t really let it affect her. She doesn’t know any different.

“She is very determined and just like anybody else,” said Lisa.

The mum-of-four added: “People stop us a lot and stare. We’ve been out walking and people have asked if she’s been burnt. In summer people are always asking if she’s sun burnt.”

But Amy is a miracle child as most babies with the condition, which causes severe dehydration, do not survive.

Lisa said: “I had a normal pregnancy.

“As soon as Amy was born I saw the midwife’s face drop. Her face told me everything. I knew something terrible had happened.”

At just nine days old Amy suffered kidney failure and doctors warned Lisa her daughter was unlikely to survive.

Lisa said: “It was a horrible time. Amy’s dad was also very ill at the time with non-hodgkin lymphoma.

“I was the only healthy one out of the three of us and I needed to look after Amy.

“But she was a very strong baby.”

It wasn’t until Amy was nine months old that she was finally diagnosed with Netherton’s syndrome.

Tragically her father died when she was a baby.

Lisa remarried five years ago to John, 46, a farmer, who Amy calls ‘dad’ and the couple have three other daughters; Eleanor, three, Alice, two and one-year-old Daisy, who do not have the condition.

Amy, a pupil at Lady Manners in Bakewell, has been unable to attend school full-time due to her allergies but now teachers have worked with her parents to ensure Amy can join in with lessons without leaving her home.

A new computer has been installed in her house with a video-conference link into the classroom. Lisa said: “This has never been done in Derbyshire before. It will make a massive difference to her life. She loves school and is very grateful to be learning.”

Amy loves English and art and dreams of becoming an artist, painting animals, when she leaves school.

She said of her condition: “Most of the time it’s not too bad but when it does get bad I can’t sleep because it’s so itchy.

“I just try and forget about it but it can get very irritating.”

She added: “I do like to come into school to see my friends but when I can’t I am very much looking forward to joining in with lessons from home. I also want to create a website of my artwork, in my spare time.”

 

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