Gill White wrote this book for her son Leo, who was born with Ohtahara Syndrome, an extremely 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.
Gill wrote the story before Leo’s first birthday. It was a difficult time and Leo was having huge numbers of seizures every day. Feeling that Leo deserved a happier story, one in which his strength and bravery was rewarded, Gill wrote one for him.
She approached Gilli B, a Fife based artist, after seeing her artwork online and loving her whimsical and quirky style. Although she was only originally commissioned to do a few illustrations, she actually loved the story so much she asked to illustrate the whole thing and Leo got his own ’book’ for his birthday!
The following year, Gill had packed his book for a visit to the CHAS Hospice Rachel House and came back one day to find that the nursing staff had read it and written the most amazing comments inside.
Bolstered by their enthusiasm, Gill 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 in this case, to help raise awareness of Ohtahara Syndrome and CHAS – Children’s Hospices Across Scotland.
This is a beautifully illustrated children’s book that tells the story of Leo, a young night with lightning dragons in his head. But, he will not give in and with the love from his family and people around him this brave little knight fights the dragons until they leave.
A moving tale of a young person dealing with epilepsy, their bravery and utter determination that they will not be beaten. It always astounds me just how strong the young really are….a lesson to us all.
A lovely tale of self belief and determination.
Thank you to Kelly at Love Books Group for the opportunity to take part in this blog tour, for the promotional material and a free copy of the book. This is my honest and unbiased review.
You can buy a copy here: https://amzn.to/2LV47wf