Published on 21.01.2022
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Sensitive to her approach, touched by her story, Imagine has chosen to encourage this wonderful project and this mother whose words and writing are committed to "living better with" the disease, for inclusion, non-stigmatization and acceptance of difference.
Through her words, find out about the genesis of a story adapted to children (and parents) to make them aware of disability and the richness of difference. Discover also the difficult but inspiring journey of a young storyteller, who fought for 7 years to see her book finally published.
"Leo is a little boy who has no friends.
Because of his handicap, the other children find him strange.
One day, he meets a golden butterfly. A funny creature, thanks to which he will become aware of the beauty of the world and its diversity.
With him, Leo will discover that each being on Earth is unique and exceptional"
The story of The Golden Butterfly was born almost by chance, 7 or 8 years ago, from a conversation with my husband. We are parents of 3 children. Our eldest child, Leo, has a severe multiple handicap due to a genetic disease. When he was a child, I used to read a lot of books to him. Telling him about the adventures of children like him would have helped him to identify himself better, to accept himself, and would have spoken to him a little more, but I had great difficulty finding stories the heroes of which were disabled. So, for him, I wrote a story that was like him.
A story explaining that the world is made of different beings, and that in each of these differences there is an incredible richness and strength.
I also wanted to make children aware, from a very young age, of the handicap, of the difference, when their look upon the others is not yet made of fear, and at a time when it is not too late to change it.
Finally, I wanted part of the profits from the sale of my book to be donated to the Imagine Institute.
I did not choose the Institut Imagine by chance.
After 4 years of diagnostic odyssey for Leo, the Institut Imagine finally discovered the genetic mutation responsible for his disease. I remember very available, attentive and caring professionals who provided us with all the answers to our questions and, above all, who allowed us to have our other children in a reassuring medical context.
Today, the book is a way to thank the Institute.
If the story came to me quite quickly, getting the book published was much more complex!
I started by contacting publishing houses but received the same answer over and over again: « It's a great project, but it's not for us ». I persevered. To improve my book, I called in an illustrator. But the answers remained the same. For 5 years, I stored and took this manuscript out of the drawer many times, until 2 years ago, at the beginning of the first lockdown. I was contacted by "Les Auteurs Masqués", a collective of writers of a new era, who donate their profits to associations. They gradually convinced me that I could self-publish my book.
In order to fund my project and on the advice of my illustrator, I launched a crowdfunding campaign on the internet. At first I didn't believe in it. But quickly I got carried away, and today I recommend this experience to anyone who would like to develop a project.
I reached 100% of my collect in less than 24 hours. Amazing!
My friends and family of course got involved, but also strangers who were seduced by the project. That others understood my personal journey and were ready to support me was very touching.
Half of the supporters I met played the game by buying several books to give to friends, hospitals and associations, and I found this approach wonderful.
I have received wonderful messages from children and families who have offered the book to daycare centers, pediatric wards, presented the story in class, or told the Principal of their school about it, so that the book could be discovered and read by as many people as possible.
Finally, last November, my project reached 328% of its initial fundraising goal, which was just crazy!
With everyone's help, my story of the Golden Butterfly travels and lands wherever possible.
I regularly receive thankful messages from parents who, thanks to the Golden Butterfly, find the right words to talk to their children about disability, and explain with confidence that everyone, with their difference, is extraordinary.
It is a great pride for me to have accomplished this project, and to be able to share it with all the children and families affected or not by disease and handicap.
Joelle Martinez