Norfolk: Charity fishing event organised for 'butterfly skin' girl
Shaun Whitmore/BBCThe family of a seven-year-old girl will hold a fishing competition to raise awareness of her skin condition.
Charlie-Mai, from Dereham in Norfolk, was born with epidermolysis bullosa (EB) - or "butterfly skin" - which causes painful blisters on her body.
The event on Sunday will also raise money for Debra UK, a charity that supports people living with EB.
Her father Kelvin said: "A cure would be the endgame. That would mean the world."
He said that even raising £1,000 for the charity would go towards thanking them "for their kindness and support".
Charlie-Mai's mother, Cat, described caring for her daughter as "a learning curve, we had to learn how to dress her skin, to figure how we care for her and what it would mean long term.
"We take each day as it comes."
Shaun Whitmore/BBCEvery day, the youngster has an hour-long anti-bacterial bath after which each blister is checked, cleaned and redressed in an "excruciating" routine.
"I have to hurt my child to make it better," her mother added. "It's heart-breaking.
"But there are major cuddles afterwards, lots of praise and encouragement. As a mum it brightens me to see how she deals with it every day."
Charlie-Mai was diagnosed at the age of 11 months after a blister was discovered on her finger.
"It's very hard to see her struggle every day with her condition," her father added.
"I remember picking her up under the arms - when you see you've taken the skin off your daughter it's the hardest thing you can ever imagine, knowing that just one little touch of her skin can hurt her.
"She'll say 'Dad i don't like my skin, I feel ugly'. If I could click my fingers and change it for Charlie-Mai I would do it in a heart beat."
Shaun Whitmore/BBCWhat is epidermolysis bullosa (EB)?
- Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile
- There is no known cure, so treatment aims to relieve symptoms and prevent infection
- Common symptoms include skin that blisters easily, blisters on the hands and soles of the feet and thickening of the skin and nails
- EB is usually diagnosed in babies and young children, as the symptoms can be obvious from birth
- But some milder types may not be diagnosed until adulthood
Source: NHS
Shaun Whitmore/BBCThe charity Debra supports about 5,000 people in the UK who currently live with the genetic condition.
The charity's vice president. Graeme Souness, who swam the Channel for the charity in May, said it was "so important that people understand how awful EB can be and how we can all help DEBRA work towards the repurposing of existing drugs to help alleviate the pain, itch and inflammation of EB."
He added: "Well done Charlie-Mai, we are all really proud of you and together we will #FightEB."
Kelvin said normal childhood activities, even a walk on the beach, could "crucify" Charlie-Mai.
"She's a strong cookie - she'll get through anything," he added.
"She's a loving, caring child, she'll have her bad days, but that's what we're there for. To support her and tell her how precious she is."
The fishing competition takes place from 08:00 BST on Sunday at Litcham Lakes and Lodges in King's Lynn.
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