After receiving news no parents ever want to hear about their young son — one dad wants to make sure his little boy will leave a legacy before he passes on.
When he was just nine months old, Jackson Garwood was diagnosed with a fatal condition called KRABBE disease.
Parents Darren, 37, and Rebecca, 34, were informed he most likely would not live past his second birthday.
A site inspector, Darren wanted to make his son a legacy — so he started writing superhero stories about his miraculous son — Jackson Superhero.
Currently, he has written and published 10 books.
“Our lives came crashing down when Jackson was diagnosed, I tried to blank it all out. We were told he was only supposed to live until he was two. I wanted to stop thinking, I wanted to sleep and never wake up. But my wife, Rebecca made me realize – all Jackson has is us, and I needed to be there.” Darren shared.
Jackson’s condition also has caused his nervous system to degenerate, with symptoms including irritability, choking, seizures, along with loss of developmental and motor skills.
There is also the possibility of signs of blindness, paralysis, weight loss as well as unexplained fevers.
Jackson was born in August of 2014, developing normally, until he reached nine months when he stopped hitting milestones and lost the ability to complete previously learnt skills — like being able to feed himself.
Darren shared how he first came up with the idea for the book.
“[Rebecca] asked me if I thought he dreamt – and we wondered what he dreamt about. I decided from that to write Jackson Superhero – he might not be able to do much – the condition affects everything including his brain – but I can help him dream by reading to him.”
“The books really don’t take long to write, a few days at most and I always like to use words that Jackson is familiar with. I sent them off to publishers last February and was published by October 2018, I was thrilled when I’d sold 4,000 copies by Christmas.”
His parents were heartbroken after he was transferred to Great Ormond Street — as Jackson was only the third case the hospital had seen in 25 years.
As he approaches his fifth birthday, Jackson has defied the doctors predictions.
Rebecca, Jackson’s mom, has been only able to work one day a week as a recruitment agent since the diagnosis — and the family have a second child.
Her name is Seren and she is two-years-old. The family says they are taking each day as it comes.
Jackson’s dad Darren added:
“No child has gone this far, but the more research I’ve done, I’ve heard of a little boy who lived for eight years. Creating ‘Jackson Superhero’ books means that although he may have lost his smile, I can make him happy by reading to him. He’s in a body that doesn’t work but whilst he might not be able to be a walker, the books mean he can sprint around the world in his sleep.”
“[We] want everyone to remember Jackson when he’s no longer here. We had a little sister for Jackson – and I want her to know who Jackson was, and what he was like. I’ve got plenty more planned such as Jackson’s solutions to the world’s pollution and I’m determined – my Jackson will have a legacy.”
To purchase Jackson Superhero, Jackson Saves an Owl, click here.
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