Watching your child battle a rare disease is your worst nightmare as a mother.
The worry, the stress, being in and out of hospital…it’s a situation that unfortunately many families have faced and the rest of us wonder how they get through.
So when I heard about the wonderful Gill White, who used the experience her son Leo has had to help others AND raise vital cash for a worth cause, I knew I wanted her to write about it for The Queendom.
What you’re about to read is a beautiful story of an amazingly brave boy and his fabulously talented mummy.
Tissues at the ready Queens.
My name is Gill White and I am the author of Leo and the Lightning Dragons, a children’s picture book published earlier this year by Fledgling Press.
All royalties are being donated to CHAS (Children’s Hospices Across Scotland), who have supported our family for the past 3 years.
Writing for Leo
I wrote the book for my son Leo, who suffers from Ohtahara Syndrome, a rare form of epilepsy.
Fifty percent of children diagnosed with Ohtahara Syndrome do not live past their second birthday.
Leo is now three and still battling in the face of adversity.
Drawing from our family’s experiences with the various medical professionals involved in our son’s care, I created a little kingdom of people who are all trying to help the brave knight Leo fight his dragons using their various skills.
Eventually, strengthened by their support, love and encouragement, Leo is able to realise that the most important thing to do is to believe in himself.
It is an uplifting rhyming story encouraging children to persevere and find strength in the face of adversity, even when it seems that nothing is working.
Leo in print
After I’d written the story, I approached Gilli after seeing her work online. We got on so well and shared so many of the same ideas, it was easy to develop the book together.
Encouraged by feedback from nurses at Rachel House and fellow parents, I approached Edinburgh author Peter Burnett for some advice on how to get the book published.
He took the book to Clare Cain at Fledgling Press, who fortunately loved the book. Fledgling Press do not normally publish children’s books but made an exception for Leo’s book, to help raise awareness of Ohtahara Syndrome and CHAS.
Using the power of Leo’s story
As the mother of a child with profound and multiple learning disabilities, it is extremely important to me that all children are able to enjoy stories, so I worked with PAMIS (Promoting A More Inclusive Society) to develop the book into a multi-sensory story.
Included in the book are ideas to help families and children create their own sensory story and these have been well received by families and schools and are also featured on the Edinburgh Book Festival Learning website.
The response to Leo’s book has been incredible and Gilli and I have been blown away by the reviews, as well as the support we have received.
It’s a wonderful feeling to have a child tell you that your book is their favourite and we have met so many enthusiastic children at our storytelling events, which have been great fun to do. We’re very much looking forward to the next ones.