Life Video

By Jess Grieveson-Smith

 

A dying five-year-old has been made a fictional superhero thanks to his doting dad – who became a published author to document their adventures.

Dad, Darren Garwood, 38 believes his books convinced Jackson that he really does have superhero powers – fighting back against five deadly infections so far this year and even regaining his ability to smile – something he lost two years ago.

Darren, a site inspector from Tilbury, Essex, is determined that Jackson will never be forgotten after a fatal diagnosis of KRABBE disease – 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 – yet the determined little boy has reached his fifth birthday.

Dad-of-two Darren and his wife, Rebecca, 35, were devastated after their seemingly perfect boy lost the ability to use his arms and smile two years ago.

But despite his brush with death, Jackson can now smile once more with Darren being spurred on to write more in the ‘Superhero Jackson’ series.

Now, after over a year 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.

“When he was admitted in April to Great Ormond Street, I really thought I’d lose him.

“He had fluid on his lungs, five different infections and had tubes breathing for him.

“My wife once 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 February 2018 and was published by October, I was thrilled when I’d sold 4,000 copies by Christmas.

“I’ve so far written 10 ‘Jackson Superhero’ stories, with the newest, ‘Jackson’s solution to pollution’ released yesterday [October 22nd].

“Since they were published, the most amazing thing is that there’s kids who want to be like Jackson now.

“I read all the feedback about my amazing son, and it’s like a therapy for me too – I know Jackson will always be with me.”

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 continually defied expectations with his smile a welcome sight.

The family – who have since welcomed two-year-old daughter Seren – now take each day as it comes, and even have a third child due in December.

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 even after Jackson’s solution to pollution and I’m determined – my Jackson will have a legacy.”

 

To see updates on Jackson, and his book series, visit: https://www.facebook.com/jacksonsuperhero/