A St Andrews mum has penned a children’s book after being inspired by her son’s fight with a rare form of epilepsy.
Gill White originally wrote the novel as a gift for little Leo’s first birthday and named the main character after him.
But the 41-year-old has now decided to publish and sell Leo and the Lightning Dragons, with all proceeds going to CHAS which has provided the family with tireless support.
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.
But Leo fought back and took his first unsupported breath. He has been defying the odds ever since and is now three years-old.
Proud mum Gill said: “Leo is such a brave, strong boy. 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 approached a local illustrator, Gilli B, after seeing her work online.
“I thought it looked beautiful and fantastically quirky,” she said.
“I asked for a couple of illustrations and intended to turn it into a poster for his room. She fell in love with the story and asked if she could illustrate the entire thing.”
Leo got the book for his birthday, and it was only ever intended as a one-off gift.
However, Gill took it to Rachel House so the nurses could pass it around and write comments inside and the idea of wider publication was born.
She spoke to an author she knew in Edinburgh, Peter Burnett, who took the book to Fledgling Press who loved it.
Gill said she hoped it would help to bring comfort to other families.
“Leo has a difficult time of it, but we recently celebrated one year with no hospital stays,” she said.
“We are in and out quite a lot, but part of the reason we can stay at home is because we have the support of CHAS.
“We go to Rachel House and they also work with the hospital to try and balance things to keep him home as much as possible; he has a good team.
“Leo requires round the clock care but we are fortunate to have nurses who come in three nights a week to support us – without them we’d be really stuck.”
The book was formally launched at Waterstones in Edinburgh’s Ocean Terminal on Saturday.
