Rare Disease Day - 28th February 2015


In this section we hope to list some children’s books that may help you discuss with your child about physical differences and accepting who we are and allowing you to do so in a happy and enjoyable way.

These titles feature characters who are different from others and find it hard to accept but the outcomes are happy and teach us how to address the issues that arise and even take advantage.

Wonder by R.J. Palacio

Wonder by R.J. Palacio

Wonder, is the unforgettable, life-affirming and internationally bestselling story of August Pullman – a boy who’s desperate to blend in, but is destined to stand out because of the way he looks.

My name is August. I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.

August Pullman wants to be an ordinary ten-year-old. He does ordinary things. He eats ice cream. He plays on his Xbox. He feels ordinary – inside.

But Auggie is far from ordinary. Ordinary kids don’t make other ordinary kids run away screaming in playgrounds. Ordinary kids don’t get stared at wherever they go.

Born with a terrible facial abnormality, Auggie has been home-schooled by his parents his whole life, in an attempt to protect him from the cruelty of the outside world. Now, for the first time, he’s being sent to a real school – and he’s dreading it. All he wants is to be accepted – but can he convince his new classmates that he’s just like them, underneath it all?

Narrated by Auggie and the people are around him whose lives he touches forever, WONDER is an funny, frank, astonishingly moving debut to read in one sitting, pass on to others, and remember long after the final page.

Click Here to buy this book from Amazon.

Elmer by David Mckee


Elmer the elephant is bright-coloured patchwork all over. No wonder the other elephants laugh at him! If he were ordinary elephant colour, the others might stop laughing. That would make Elmer feel better, wouldn’t it? The surprising conclusion of David McKee’s comical fable is a celebration of individuality and the power of laughter.

The story is a great lesson on staying true to yourself and although you are different from others, different is good!

Click Here to buy this book from Amazon.


Itchy Witchy by Aadam Elahi

Aadam Elahi who struggled with eczema throughout his life, has created a storybook encouraging children with skin conditions to stay positive and not to feel isolated.

The book, entitled ‘Itchy Witchy’, follows the story of eight-year-old Josh who feels frustrated and sad because of his eczema, but eventually begins to treat the condition and feels much better.

Click Here to view this book online.

Dafnis: He came, he left by Marjolein van Kessel

Dafnis was born in 1998, covered with lots of nevi. His condition is named Congenital Melanocytic Nevi (CMN). Within a month, he went for surgery to remove as many as possible. In his early childhood, he had four surgeries. Complications appeared, but weren’t diagnosed correct. He has had seizures, caused by Neurocutaneous Melanocytosis (NCM). NCM is a rare and complication of CMN and can be fatal. He outgrew his seizures. He became a joyful kid with a good sense of humor.

Until January 2012, he came home from school nauseous and dizzy after sports class. It was the beginning of a six month battle against NCM. Even then, he didn’t lose his sense of humor. In July 2012, he passed away at the age of 13 years. His last wish was not to be forgotten. He left behind an older sister, younger brother and both his parents.

During his battle his mother wrote e-mails to keep friends, family and medical staff informed. After he died she used the documents to write this book. She wants to find an answer why it happened, why he had to die at such a young age and share her feelings on how to deal with great loss.

Click Here to view this book online.