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The Independent UK
The Independent UK
David Young

Darcee, 5, is cover star of book explaining her skin condition to classmates

A five-year-old girl has become the cover star of a book explaining her painful skin condition to classmates at her new school.

Darcee Birrane begins primary school in Lisburn on Tuesday.

Darcee has epidermolysis bullosa (EB), also known as butterfly skin, a condition that causes the palms of her hands and soles of her feet to blister and wound at the slightest touch.

The specially-created storybook about her illness will teach fellow pupils at Harmony Hill Primary School about the condition and why their new friend sometimes has to wear bandages.

I love my new book because it's all about me and my special skin, and my mummy and nanny are in it too
— Darcee Birrane

The illustrated book Darcee’s Story, created by EB charity Debra, explains how the Co Antrim youngster is just like any other little girl who loves drawing and stories.

It also lets her new friends know that her illness is not contagious and does not stop her playing games with them.

It will be handed out to Darcee’s fellow pupils and teachers as the new school year begins this week.

“I love my new book because it’s all about me and my special skin, and my mummy and nanny are in it too,” Darcee said.

“I really hope my friends love my book and learn about my butterfly skin.”

Darcee’s mother, Samantha Stead, said EB affects her daughter’s life in several different ways.

“Sometime it makes her feel special – and even though it can be very sore and itchy, it doesn’t stop her from trying out new things,” she said.

“But she worries that other children will think it’s yucky, especially when her blisters pop.

“So, she is very happy her new friends now have the opportunity to learn all about her butterfly skin.

“We count our blessings every day and things could always be a lot worse.”

Head of family support services at Debra, Deirdre Callis, said the charity began producing personalised books for children last year.

“The books were launched to help children explain their EB story in an easy and accessible way,” she said.

“They are ideal for events such as starting at a new school.

“Our first book focused on the story of a child moving to a mainstream primary school and brought together the information that would most help teachers and classmates to welcome a new student with EB.

“The booklet has been received very positively by families, schools, and our international partners.

“Because of this, we now offer it to all families living on the island of Ireland.”

For more information about EB and charity Debra visit:

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