Darren Garwood, 37, from Tilbury, Essex, started writing books about his son Jackson after he was diagnosed with the rare KRABBE disease
A doting dad has turned his dying four-year-old son into a real life superhero in order to make his final wish come true.
Darren Garwood, 37, from Tilbury, Essex, was determined his son Jackson, who was diagnosed with KRABBE disease, would never be forgotten and so he immortalised him in books.
Jackson was diagnosed with KRABBE, a deadly disorder of the nervous system, when he was 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.
Dad-of-two Darren and his wife, Rebecca, 34, were devastated after their seemingly perfect boy 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 ensure he was never forgotten.
Site inspector Darren made Jackson into a fictional superhero and penned tales about their adventures together.
Now, after over three months of hard work and having completed 10 books, Darren is now a published author and his tales can be purchased 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’s condition has caused his nervous system to degenerate and symptoms include irritability, choking, seizures along with loss of developmental and motor skills.
There can also be signs of blindness, paralysis, weight loss and unexplained fevers.
Born in August 2014, Jackson developed normally 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.
Since the diagnosis, Jackson’s mum, Rebecca Garwood, a recruitment agent, has only been able to work one day a week – but Jackson has defied expectations, as he now approaches his fifth birthday.
The family – who have since welcomed two-year-old daughter Seren – now take each day as it comes.
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.”