With events such as RARE DISEASE DAY doing much to raise the profile of rare diseases the team at The Pongo Bongo wanted to do their bit and take an active part in Rare Disease Day 2018. They have teamed up with unbound.com to create this special picture book for children. Through illustrated tales, they aim is to help  children and adults, whether they are directly affected or not, to understand this rare disease and to improve the social experiences of those who are, by raising awareness.  

A version of this picture book has already published in Spanish telling the story of Little Anton (https://vimeo.com/196412393). Through the success of this campaign they have been encouraged to bring the project to the English speaking rare community.  

They have launched a crowd funding campaign to raise the funds necessary to make this project a reality. Through this picture book we aim to raise awareness in a positive and age appropriate way. 

My name is Rowan, and I am the first ever Youth Editor for Rare Revolution Magazine. I am interested in politics and children’s rights and am excited to use my interests and experience in giving others a voice. 

I became interested because my mother and little brother suffer from familial cold autoinflammatory syndrome type 2.  They are the only two with the disease in the United Kingdom.

I write as a young blogger for the Children’s Commissioner for Scotland’s website, where I write about children’s rights, rare diseases and being a young carer.

Not having age appropriate material really bothered me when I went to a parliamentary reception in the Scottish Parliament where the Minister Mark McDonald MSP was launching The State of Children’s Rights 2016. The evening was organised by Together (The Scottish Alliance for Children’s Rights).  Despite it being specifically about children's rights, I was the only child in the audience, because, it wasn’t advertised to children to know the state of their rights.

When I saw the copy of the report that they had, it was a book.  It was 196 pages long with 1,902 references which took up 32 pages! 

Children’s rights are becoming harder to understand for children themselves because adults are not speaking to children to ask them how they want the information.  As they had spent so much time and money on this document, in my opinion, some of the money should have gone to helping children understand these rights.  Surely, this is the only way that children can trust that they have rights and they are being respected?

It made me very angry and I told my father it was wrong.  Spending all this money researching and writing this book every year and yet had not making it accessible and readable to anyone who hadn’t gone to University, just did not make sense.

​I have found that most people don’t think about children when they are writing things about children, and this can be bad because: children cannot understand the information which means that they cannot receive the information which they need in their daily lives.

This is happening more and more and I am glad that Rare Revolution Magazine want to put a stop to it.  Their children’s magazine will help inform children with rare diseases, doctors who support them and the young carers of children with rare diseases to better understand the child’s view.