Father who publishes children’s books starring his terminally ill son, 5, as a superhero reveals they’ve helped his little boy regain his ability to smile for the first time in two years
- Darren Garwood, from East Tilbury, Essex, writes published stories about his son
- His and wife Rebecca’s son Jackson, 5, was given a year to live at the age of one
- He was diagnosed with Krabbe disease which sees most children die by age two
- Darren’s book Jackson’s Solution to Pollution is his second in a series of stories
A father who publishes children’s books starring his terminally ill five-year-old as a superhero says they’ve helped his son smile again after he lost the ability two years ago.
Darren Garwood, 38, from Tilbury, Essex, believes his stories have convinced young son Jackson that he really does have superhero powers, after fighting off five deadly infections this year and even grinning once again.
Site inspector Darren has used his books to immortalise Jackson after the youngster was diagnosed with the neurological condition Infantile Krabbe Disease when he was one.
Parents Darren and his wife Rebecca, 35, who also have daughter Seren, two, and are expecting their third child in December, were given the devastating news that Jackson was unlikely to survive for little over a year.
Darren believes his stories have convinced Jackson (seen together) that he really does have superhero powers, after fighting off five deadly infections this year and even grinning again
Darren Garwood, 38, from Tilbury, Essex, who publishes children’s books starring his terminally ill five-year-old as a superhero, says they’ve helped his son (pictured left) smile again after he lost the ability two years ago. Pictured: Young Jackson grinning recently (right)
Darren pictured with his wife Rebecca and their daughter Seren, two, and son Jackson, who was diagnosed with the neurological condition Infantile Krabbes Disease when he was one
His rare condition weakens the muscles and affects his ability to move, chew, swallow and breathe.
Two years ago, Jackson lost the use of his arms and smile but miraculously, the little boy has now regained the use of his grin.
Darren’s his latest tale, Jackson’s Solution to Pollution
This has spurred Darren on to write more for the Superhero Jackson series, which currently has 10 books in its collection.
Darren, who launched Jackson’s Solution To Pollution yesterday, said he got the idea for the stories when his wife asked him if he thought Jackson dreamed or not.
He recalled: ‘We wondered what he dreamt about and 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.’
Aimed at toddlers, the tales are rhyming stories and were first published in October 2018, with the first book, Jackson Saves an Owl, selling 4,000 copies by Christmas.
Jackson, pictured with his parents and his sister, struggles to move and breathe because of his rare condition which weakens his muscles
Darren, pictured with his son, said he got the idea for the stories when his wife asked him if he thought Jackson dreamed or not
Parents Darren (pictured with his son) and his wife Rebecca, were given the devastating news that Jackson was unlikely to survive for little over a year
‘Since they were published, the most amazing thing is that there’s kids who want to be like Jackson now,’ Darren said.
What is Krabbe disease?
Krabbe strikes around one in 100,000 people, according to estimates by charities.
A gene mutation means sufferers don’t make a special enzyme needed to break down lipids (fats) in the brain.
The lipids build up and break down the myelin sheath that protects nerve endings, leading to nervous system degeneration.
Most children with it are babies and die by the age of two.
‘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.’
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, Rebecca, 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.
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.
Two years ago, Jackson (pictured as a baby) lost the use of his arms and smile but miraculously, the little boy has now regained the use of his grin
Mother Rebecca reads the latest Jackson story to her children. It was released on October 22
Since the diagnosis, Rebecca, a recruitment agent, has only been able to work one day a week – but Jackson (pictured with his sister, left, and in hospital, right) has continually defied expectations with his smile a welcome sight
‘Creating Jackson Superhero books means that although he may have lost his smile, I can make him happy by reading to him.
‘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.
He continued: ‘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 and I’m determined – my Jackson will have a legacy.’
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