Darcee is 5 and was born with EB simplex. This year, she is starting school after becoming the star of a specially created storybook about her condition.
Because of her EB, the palms of Darcee’s hands and the soles of her feet break out in painful blisters at the slightest touch.
In her own personalised illustrated book called Darcee’s Story, she explains how she 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 condition is not contagious and doesn’t stop her playing games with them.
“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 mom, Samantha, has 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. 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.
Our Head of Family Support Services, Deirdre Callis, and team began producing personalised books for children last year.
“The bespoke 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 in the island of Ireland.”
For more information about EB and how you can apply for your own personalised booklet, click here.