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

Read more at Independent.co.uk.

A little girl who has lived with a painful and incurable skin condition since birth, is starting primary school after becoming the cover star of a specially-created storybook about her illness. 

Darcee Birrane, five, was diagnosed with epidermolysis bullosa (EB) simplex, also known as Butterfly Skin, at just three weeks old.

The palms of her hands and soles of her feet break out in agonising blisters at the slightest touch.

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

And even though she sometimes wears bandages, the booklet lets her new friends know that her illness is not contagious and does not stop her playing games with them.

As the new school year begins, it will be handed out to Darcee’s fellow pupils and teachers at Harmony Hill Primary School in Lisburn.

“I love my new book because it’s all about me and my special skin, and my mummy and nanny [grandmother] 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 impacts 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.” 

EB is caused by the absence of proteins which bind the skin together, creating excruciating blistering at the mildest touch or movement – in severe cases requiring bandaging every 24 hours.  

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, please visit: debra.ie.

Get in Touch