by Jade Small
Darren Garwood created and published a series of ten books to date with his four year old son Jackson, as the superhero.
Jackson was born in August 2014 in Essex, to Darren and Rebecca Garwood – a healthy baby boy developing normally until the age of nine months when he suddenly stopped meeting standard development milestones and started losing milestones already met and learnt kills, such as feeding himself.
Jackson was diagnosed with KRABBE, a rare and deadly nervous system disorder, at Great Ormond Street Hospital. Jackson’s outlook was bleak and doctors held out little hope that he would survive past the age of two. The hospital had only every seen three cases, including Jackson, in the past 25 years.
Krabbe disease (KD) is inherited in an autosomal recessive manner. To be affected, a person must have a mutation in both copies of the responsible gene in each cell. The parents of an affected person usually each carry one mutated copy of the gene and are referred to as carriers. The infantile form of Krabbe disease is usually fatal before the age of two. Those infants who receive cord blood stem cells before the appearance of symptoms have longer lifespans. Those with late-onset Krabbe disease typically live between 2 and 7 years after the onset of symptoms.
Jackson turned four last year, double the doctors’ initial two year expected lifespan.
Determined not to let Jackson be forgotten, Darren started writing a series of books, in which Jackson is a superhero, with ten books published so far.
Darren, a full-time site inspector, explained the impact this disease had on Jackson and their lives: “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.”
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.”
Featured Image Credit: Caters