Four-year-old with fatal condition now superhero in storybook

Four-year-old with fatal condition now superhero in storybook
Photo credit: Caters.

A four-year-old UK boy with a rare, incurable condition has been immortalised as a superhero in a book written by his dad.

Jackson Garwood was diagnosed with the fatal Krabbe Disease when he was just nine-months old, and his parents Darren and Rebecca were told his chances of making it past the age of two were slim.

Krabbe disease is an inherited disease that causes progressive damage to the nerve cells in the brain and throughout the nervous system, says the Mayo Clinic website.

Mr Garwood decided to start writing books featuring Jackson as a superhero after he and his wife had a conversation about what Jackson dreams about.

"She asked me if I thought he dreamt, and we wondered what he dreamt about," he told Caters.

"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."

He never expected the books to be so well received by the public, selling 4000 copies in the first two months, and he has already written nine more.

"The next one - Jackson's solution to the world's pollution," is 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."

Jackson was born in 2014 and developed normally until he reached nine-months old, when he stopped hitting milestones and lost the ability to do tasks he previously had no trouble with, reports Caters.

Mr Garwood says Jackson has lived far longer than doctors expected, and the family has learnt to take each day as it comes.

"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."

He said creating the books was his way of making Jackson happy, even though the four-year-old can no longer smile.

"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 said he hoped the books would also help his daughter to remember her older brother when he's gone.

"We had a little sister for Jackson and I want her to know who Jackson was and what he was like."

"I've got plenty more planned, I'm determined my Jackson will have a legacy."

Caters News

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