A loving dad managed to make his dying five-year-old son smile again after making him a fictional superhero in his published books.
Darren Garwood, 38, says that his books helped his son Jackson see the superhero in himself and fight five deadly infections just this year and even managed to smile again, something he hasn’t been able to do in two years.
Jackson is suffering from KRABBE disease, a deadly disease that affects the nervous system. He was diagnosed at nine months old and was only given until his 2nd birthday to live. But amazingly enough, the child has reached the age of five.
Watch the video of the little boy smiling in the video below.
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Video credit: Rumble
Darren and wife Rebecca, 35, felt devastated when their boy lost the use of his arms and legs two years ago along with his ability to smile.
But the ‘Superhero Jackson’ has proven to be self-prophetic in a way by making Jackson believe in himself more.
Darren, a site inspector from Tilbury, Essex, spent a year working hard and has completed 10 books which he managed to get published and are being sold 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 realize – 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 are 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.”
Because the disease affects the nervous system, Jackson suffers from seizures and the loss of developmental and motor skills. He is also at risk of choking and suffers from irritability. Blindness, paralysis, unexplained fevers, and weight loss are also possible.
Jackson’s parents brought him to Great Ormond Street hospital after he lost the ability to perform previously learned skills when he was nine months old. These skills include the ability to pick up his dummy and to feed himself.
It was there at the hospital that the heartbroken parents found out that Jackson’s case was only the third that the hospital has seen in 25 years.
Ever since Jackson’s diagnosis, mom Rebecca Garwood, a recruitment agent, only had enough time to work one day a week.
With Jackson having defied expectations by smiling again, the family is taking things one day at a time. Jackson was followed by two-year-old Seren and a third child is expected 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 livable.
“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.”
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