Darren Garwood, 37, from Tilbury, Essex, started writing about his son Jackson after he was diagnosed with KRABBE disease. The books have now been published.
37-year-old Darren Garwood and his wife Rebecca, 34, were given the most devastating news they could hear as parents. Knowing that your child is suffering from a serious illness and might not make it, especially when they were supposed to have their whole life ahead of them is heartwrenching. That metaphorically kills them, and the emotional turmoil is inevitable. One father, however, was hell-bent on not letting this drag him and his son down. He came up with an idea that would help him and his family get through these difficult times. The father from Essex, England, has turned his terminally ill son into a superhero in a series of books he wrote. His son Jackson is just four-years-old and was diagnosed with KRABBE, a very rare disease. To cheer him up and lift the spirits of the entire family, Garwood made Jackson the central character of his 10-book series entitled Jackson Superhero which is now available to the public.
KRABBE is a degenerative condition due to which Jackson has to be looked after by someone at all times. KRABBE is a deadly disorder of the nervous system which is said to be so rare that it is seen only in one child per year. He was diagnosed when he was just nine-months-old. The condition has hugely impacted Jackson's ability to move his limbs and even see. Doctors gravely informed the family that the boy might not even survive to see his second birthday.
In order to immortalize his younger child, Jackson, Garwood decided to start writing a book about him where he was a superhero. That way, no one would ever forget the boy and the battles he was faced with before he was even a year old. Darren Garwood is a site inspector who is now also an author. The 10-book series talks about their adventures together. As reported by the Mirror, Garwood said, "Our lives came crashing down when Jackson was diagnosed, I tried to blank it all out." It was probably the worst news he and his wife had ever heard.
When a 37-year-old dad found out his only son had a rare and terminal illness, he "could have killed himself". https://t.co/TscnVOig2z— Essex Live (@essexlive) February 18, 2019
"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," added Garwood. He further explained that with the KRABBE disease patients tend to lose every single skill they have one after the other. "What I always try to get across to Jackson is that when you are asleep, you can do anything you want to do. You can let your imagination run wild." This was one of the things that inspired Garwood to start writing the book series.
We all know Jackson is a superhero and proving it again by kicking the crap out of pneumonia. He is now Out of the resus section and recovering well in the children’s ward. pic.twitter.com/A0CnMbraGG— jackson superhero (@jacksonsprhero) November 2, 2018
One day, Rebecca asked Garwood if he felt like their son, Jackson, ever dreamed and if so, then what did he dream about? This is what inspired Garwood to start imagining the world from his son's point of view. From that, he was motivated to start writing about how his son was a superhero. "I decided from that to write Jackson Superhero," Garwood said. "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." At first, he started writing these books only to read them out to his son, which is why he only used words that Jackson was familiar with.
Absolutely delighted to receive a signed copy of ‘Jackson Superhero’ from a local family. This is perfect for our Reading and Writing Week and we can’t wait to read it with the children...#jacksonsuperhero #bestschoolyearever pic.twitter.com/TC8r1CsM3P— Arthur Bugler (@ArthurBugler) February 27, 2019
"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," said Garwood. "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." Three months of hard work was all it took for Darren Garwood to finish his series and make sure that his son, who was also a fictional superhero, would never be forgotten. The books that have now been published are available across the world. "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," said Garwood. Jackson was born in 2014 and developed normally until he was nine-months-old. He suddenly stopped hitting milestones and stated to lose skills he had previously learned, even skills like being able to feed himself. The toddler was sent to Great Ormond Street Hospital where the family received the heartbreaking news. The condition is so rare that this was the third such case the hospital had come across in the past 25 years. The condition has caused Jackson's nervous system to degenerate, with symptoms including choking, seizures, and loss of motor skills.
Despite all of this, Jackson has managed to always exceed expectations. Initially, doctors suggested that he would live till around the age of two. However, the boy is now four-years-old but his condition hasn't quite improved. "Doctors no longer know how long Jackson has got to live," Garwood said. "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 further added, "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."