The Courier & Advertiser (Angus and Dundee)
Book tour for mum who wrote happy ending for her ‘brave, strong’ son Leo
PUBLISHING: Boy, 3, suffers from a form of epilepsy called Ohtahara syndrome
A children’s story written by a mum from St Andrews as a labour of love for her little boy is to be brought to life with a series of free storytelling sessions taking place across Tayside and Fife.
Inspired by her son Leo’s fight with a rare form of epilepsy, Gill White made him the star of a story, titled Leo And The Lightning Dragons, illustrated by Ladybank artist Gilli B.
Critics, parents and libraries alike have taken the book to heart since it was published by Fledgling Press in January and all royalties from sales are being donated to Children’s Hospices Across Scotland (CHAS).
Three-year-old Leo was born with Ohtahara syndrome, an extremely rare form of epilepsy which causes seizures and developmental delays. Just three days after entering the world, doctors switched off his ventilator and told Gill and her husband, Andrew, to say goodbye. Leo fought back and took his first unsupported breath and he has been defying the odds ever since.
“Leo is such a brave, strong boy,” Gill said. “He has had seizures every day since he was two months old, sometimes over 170 in a day. Half of children with his condition do not survive past two years old.
“You are always taught that if you fight and fight and fight, you can overcome anything. He is doing that but, ultimately, his condition can’t be cured.
“I just thought it was really unfair and he deserves a much happier-ending story than that, so I wrote him one.”
Gill was invited to the Scottish Parliament by Pamis – Promoting A More Inclusive Society, which supports those with profound learning disabilities – and performed the sensory story. That was so well received that the book will be taken on tour over the coming weeks.
She said: “The response to Leo’s book has been incredible. I am blown away by the reviews, as well as the support we have received. A reprint had to be ordered only a week after publication, which was just amazing for us.
“These particular events will be great fun for all kids, with colouring, storytelling, shield and crown making, book signing and music. We also have a selection of sensory items for the kids to play with, which have proven popular so far.”
“As well as the book shop and library tour, Pamis and I are also arranging a number of events for the Leo And The Lightning Dragons Sensory Story, which has been adapted for those with profound and multiple learning difficulties.”
The tour will see events held at Waterstones branches in Perth on March 23, Kirkcaldy on March 30, Dunfermline on April 6, Dundee on April 12 and St Andrews on April 20.
After-school sessions will be held at Cupar Library on May 10, Cowdenbeath Library on May 17 and Kirkcaldy Library on May 24, while Gill will also be appearing at the Wildhood Festival at Tullibole Castle, Crook of Devon, on Saturday and Sunday, June 1 and 2.