Fife mother Gill White is so inspired by her son Leo’s fight with a rare form of epilepsy that she has made him the star of a children’s book. The release of that book – titled Leo and the Lightning Dragons, published by Fledgling Press – is set to be celebrated with an all-ages launch event at Waterstones in Edinburgh’s Ocean Terminal on Saturday, 9 February, from 11am-12pm. All royalties from sales of the book will go to Children’s Hospices Across Scotland.
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. Shortly after, Leo fought back and took his first unsupported breath. He has been defying the odds ever since and is now three-years-old.
After surviving his first few days and a spell in intensive care, the first-time parents took him home to St Andrew’s and, as is often the norm for parents caring for children with life-limiting conditions, they immersed themselves in learning about principles of physiotherapy, medication and neurology in order to better understand Leo’s complex needs and care for him there.
Combined with their daily diligence, the ground-breaking CHAS at Home service has also played a crucial part in Leo’s care. This outreach involves sending trained carers into the community to offer respite and nursing to families either in remote locations or in cases where it’s easier for children to be looked after in the comfort of their own home.
“Leo has a difficult time of it, but we recently celebrated one year with no hospital stays. 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.
Intended as a gift for Leo, Gill wrote Leo and the Lightning Dragons for his first birthday. She 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 the 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.
“I approached a local illustrator, Gilli B, after seeing her work online – I thought it looked beautiful and fantastically quirky. 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. He got a proper book for his birthday, but it was only intended as a lovely wee gift.
“A year later, I took it up to Rachel House where the nurses passed it around and wrote really lovely comments inside the book. They and my friends encouraged me to get it published, so I spoke to an author I knew in Edinburgh, Peter Burnett, and asked his advice. He took the book to Fledgling Press who fortunately loved it.”
Leo and the Lightning Dragons synopsis:
Everybody in the kingdom is supporting the brave knight Leo in his battle against his fearsome dragons. They try lots of different things to help him defeat them but eventually Leo realises that the most important thing to do is to believe in himself.
This beautifully illustrated book with a poignant and uplifting rhyming story encourages children to persevere and find strength in the face of adversity, even when it seems that nothing is working.
Review copies of Leo and the Lightning Dragons are available upon request. For further information or an interview opportunity please contact: David Kerr, Press Officer, firstname.lastname@example.org, 0131 444 4013.