Cork father of boy with bone disease hopes his book will inspire others to celebrate difference
David King is hoping his son’s imagination will inspire others, writes Health Correspondent
WHEN Tom Clonan rang David King and said “finally, here is a book for a parent like me”, David knew his story had done what he had set out for it to do: it spoke to families dealing living with difference.
“I welled up, it was emotional to hear that, because that was why I wrote it. I was imagining parents like me with children like Adam, in and out of hospital, getting treatments, and I wanted them to feel spoken to by our story.
“I wanted to say to them: ‘Difference can be an adventure, just as life is an adventure’. For me, it’s about being empowered by that difference.”
Five-year-old Adam King is the star of his father’s book, .
Adam was born with osteogenesis imperfecta (OI), a brittle bone condition that causes stunted growth and makes him prone to fractures — although he has done very well to date, with the exception of fracturing both his left and right femur.
He is generally a wheelchair user, but thanks to the excellent care he receives from consultants in Temple St Children’s Hospital, Cork University Hospital and Enable Ireland, he is also able to crawl and sometimes walk with assistance.
Adam may be short of stature, but what he lacks in height, he makes up for in spirit.
Like any five-year-old, he has a vivid imagination. His father’s book, as well as being a celebration of difference, is a tribute to innocence, to the indomitable human spirit, but most of all, to the powers of the imagination.
So while those who don’t know any better might only see Adam’s wheelchair, in fact Adam knows it’s a Formula One car winning the Grand Prix. And where some might see a walking frame, Adam can see a horse going into battle.
And those pesky intravenous drips that must sometimes be inserted during hospital visits — But Really — they supply the superjuice Adam needs to fly high above the rooftops in full superhero mode. The book is an interplay between reality and fantasy.
“So you see Adam’s life is different, our lives are different, but it’s not bad. It’s just different. It’s an adventure,” said David.
David and his wife Fiona, who live in Killeagh, East Cork, have three other children — Danny (10), Katie (8) and Robert (7).
They are also looking forward to the birth of their fifth child in the run-up to Christmas.
The months prior to and after Adam’s birth were not easy. He was diagnosed in utero and stem cell treatment was delivered. He was injected, while in the womb, with bone-forming stem cells.
David says the first year was fairly traumatic and, in a way, the book has been a form of catharsis for him.
“In part, it was an exercise in getting that trauma out, but also about celebrating our life, which is really great. Adam is inspirational, he is the embodiment of life.
“I set out to write a story that would capture his spirit and is it. It’s the story of Adam and it’s the story of our family and it’s the story of the families of children with additional needs.
“Children and families who live with additional needs are a hugely important topic in modern society. There are many children in Ireland, and indeed across the world, who require support for different acute and chronic conditions. But rarely are their tales told in such a way that we can see beyond their disability, to their humanity.
“That’s why it meant so much to me when Dr Tom Clonan rang.”
Tom a security specialist and analyst with at TheJournal.ie, but first and foremost a father and disability advocate, has a son Eoghan who has Pelizaeus-Merzbacher disease (PMD) a rare progressive condition, which affects the central nervous system. A high-profile campaigner for services and supports for children and adults with disability, he has written passionately about his fears for his son’s future.
David asked Tom to review his book.
When Tom told him his book spoke to him in a way no other book had every ever done, David was overwhelmed.
He hopes that other parents who have children with additional needs will feel the same way.
David spent a year working on the book along with illustrator Jesse de la Cour who was born in Cork and is a self-taught painter and illustrator.
“It was a labour of love for both of us and she captured the energy, life, and spirit of the children so well in her beautiful illustrations,” said David.
Adam has already road-tested the book with his schoolmates at Clonpriest NS, Gortore, where he brought it into every class and explained to pupils what the book was about.
“I think it’s a great way to help educate kids about difference so that they can see it’s part of everyday life and awesome also,” said David.
The book, priced at €11.99 with some of the proceeds going to children’s charity Bumbleance, for whom Adam is an ambassador, went on sale on Amazon at the weekend, and is currently making its way “into all good bookshops”, David says.
So far, all the feedback has been positive and copies are flying out the door.
Among those to endorse it is Vicky Phelan, the woman who blew the lid on the cervical cancer scandal.
In a tweet, Vicky said: “This looks like a fabulous book. I have a daughter with a visual impairment and epilepsy and struggled when she was small to find books that she could relate to that weren’t about ballet or horse riding — things she couldn’t do.
“The very best of luck with this book.”
CONNECT WITH US TODAY
Be the first to know the latest news and updates
