Superhero boy defying the odds despite a rare condition

  • Tap above to watch video report by Natalia Jorquera

Jackson Garwood's parents were told he may not live beyond the age of two, but very soon he will be turning eight years old.

Jackson has Krabbe disease, a rare condition that affects about one in 100,000 births, and it means his parents, Darren and Rebecca, must do everything for him.

Jackson was diagnosed with the condition when he was just a year old, and the family had the devastating news that there is no treatment for the illness, and that Jackson may only live for another year.

"I just remember feeling sick and going dizzy," Darren said, "It's strange to say this but every birthday you don't think you're going to reach the next one, so we always try and have a big day for him. Hopefully he gets to nine and we have another big day for him!”

Jackson with his dad Darren at their home in East Tilbury Credit: ITV News

Jackson's doctors say the outstanding care given to him by his family at their home in East Tilbury has helped him survive against the odds.

They have four hours a month of support from a local hospice, an annual appointment at Great Ormond Street Hospital, and care when needed from paediatricians at nearby Basildon Hospital.

Dr Maimuna Mushabe, who has treated Jackson, told ITV News, "The children tend to die by their second birthday, so this is very unusual. Credit goes to his parents - they do an amazing job. There is no treatment for Krabbe's so there is only supportive care."

Jackson is treated at Great Ormond Street Hospital Credit: PA

Managing with a child who is so unwell means the family has turned to ingenious ways to help fund his care. In 2018 Darren and Rebecca had the idea to write a book for Jackson, in which he becomes a superhero. By day he may be limited in what he does, but at night, he can do whatever he likes with his super powers.

Darren recalls, “My wife asked me one night, 'I wonder what Jackson dreams of', so I thought, let's make his dreams up for him."

Darren has now published four "Jackson Superhero" books, with a fifth in the pipeline. The family are currently raising funds for special equipment which will mean they can take Jackson safely on a family holiday with his two younger sisters.

Jackson loves being read to

Jackson loves being read to and sung to, and his family say they want to give him the best quality of life they can.

You can keep up to date with how he is getting on by searching "Jackson's Smile" on Facebook.