Darren Garwood from Tilbury, Essex and his wife Rebecca were given the devastating news that their little boy Jackson had KRABBE disease, a rare and deadly nervous system disorder when he was just nine-months-old.
The rare condition – which is thought to only affect one child per year – left Jackson with a prognosis of living only to his second birthday.
The couple were shattered after their son lost the ability to use his arms and smile. But the couple refused to allow his condition to hold him back and Darren decided to start writing books about Jackson to make sure he was never forgotten.
He decided to start writing a series of books, in which his son is a superhero. Site inspector Darren made Jackson into a fictional superhero and penned tales about their adventures together.
Now, three months and 10 books later Darren has had the books published and they can be bought worldwide.
Darren said: “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 realise – all Jackson has is us, and I needed to be there.
“She 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.”
“I’ve so far written 10 ‘Jackson Superhero’ stories, with the next one, ‘Jackson’s solution to the world’s pollution,’ due out in May 2019.”
“Since they were published, the most amazing thing is that there’s kids who want to be like Jackson now.”
Jackson was born in August 2014, and he was absolutely normal until he reached nine months when he stopped hitting his milestones and lost the ability to complete previously learnt skills – such as being able to feed himself and picking up his dummy.
After being transferred to Great Ormond Street, his heartbroken parents were informed that Jackson was only the third case the hospital had seen in 25 years.
The condition has caused Jackson’s nervous system to degenerate, with symptoms including choking, seizures and loss of motor skills.
But despite what doctors have said, brave Jackson has defied expectations.
Darren added: “Doctors no longer know how long Jackson has got to live.
“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 now sleeps properly, despite his chest and water infections, the fact he can’t move or speak.
“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.
“I 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.
“Writing these books, reading them to him has turned something terrible into something liveable.
“It makes you see that ultimately humanity is good – I need to not be angry and sad.
“These books are never ending – they are his dreams and the books are our escape.
“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.”