'I don't want my son to be forgotten': Dad of six-year-old boy with rare genetic disorder leaves social media users in tears

'I don't want my son to be forgotten': Dad of six-year-old boy with rare genetic disorder leaves social media users in tears

A father of a young boy with a rare genetic disorder is raising awareness of the disease by sharing heart-warming videos of himself singing to his son through social media.

A father of a young boy with a rare genetic disorder is raising awareness of the disease by sharing heart-warming videos of himself singing to his son through social media.

Darren Garwood, 39, is father to six-year-old son Jackson, whom he shares with his wife Rebecca, 36.

The couple, who lives in East Tilbury, Essex, are also parents to Seren, their three-year-old daughter.

Sadly, Jackson has been struggling with his illness since he was just one year old.

The young boy was diagnosed with Krabbe disease – also known as globoid cell leukodystrophy.

The rare genetic disorder destroys the protective coating of nerve cells in the brain and throughout the nervous system.

Jackson's parents were told he would likely only live until age two.

However, Jackson has defied doctors' expectations and is still alive today, although he requires full-time care from his mum, and has to be fed through a tube.

After realising that singing relaxes his son, Darren began filming videos of himself serenading the boy with all his favourite tunes.

He has been sharing the adorable videos online in the hopes of educating more people about the rare genetic disorder.

"Rebecca and I have always loved singing to Jackson," Darren said.

"We sing him songs that mean stuff to us or things that he likes and he will often give us a little smile while we are singing to him." Darren started sharing the videos on Facebook and Youtube in the hopes of giving people a glimpse into what life is like for Jackson.

He said: "I also wanted people to see how the singing calms him down and being spoken to really helps him to relax.

His favourite song is 'All About You' by McFly, and I feel like the lyrics really relate to him." Darren and Jackson's videos have gained thousands of likes and comments on social media, bringing tears to people's eyes.

However, the dad says the biggest motivation for doing the videos – and sharing them with the world – is so that Jackson won't be forgotten.

He said: "I don't want my son to be forgotten so I love that loads of people know him now.

We've had so much support, and it gives me and Rebecca a real pick-up.

It's also nice to know how many people care about Jackson and are thinking about him." Jackson's diagnosis came as a shock to the parents, and the dad admits his world came crashing down.

"Up until he was one, Jackson was just like every other child," Darren, a clerk of works for Essex highways, said.

"He was trying to walk, talk, and was always being cheeky.

But just after his first birthday, he stopped using his arms; I noticed that he was trying to pick up food with his mouth instead." After taking him to Great Ormond Street Hospital, the couple was given the devastating diagnosis of Krabbe disease.

Just one child in the UK is born with the condition each year.

Darren said: "When we were then told Jackson was unlikely to live past two years old, our world crashed.

The stress of hearing those worlds stopped me from eating and drinking properly, my head just spiralled, and I died inside.

"I couldn't imagine life without him, and I would have done anything to trade places with him.

I still don't think I've recovered from it.

Due to his condition, Jackson suffers from poor vision and is unable to walk, talk or hold his own neck up.

He is also fed through a feeding tube after losing his ability to swallow." Jackson regularly undergoes hyperbaric oxygen therapy at home, which regenerates red blood cells and helps rebuild his nerves.

He also has a cough assist machine to clear fluid from his lungs at certain points during the day.

Despite his illness, Jackson is a happy little boy who loves being cuddled by his mum and dad.

Darren said: "He also loves being read to, and this inspired me to create a children’s book series called Jackson Superhero.

"It's about a little boy who has no powers in the day, but at night, when weightlessness takes over, and he sinks into his dreams, he becomes a superhero." Darren's books have been hugely successful, even receding rave reviews from comedian and actor Russell Brand.

All proceeds from the books go towards paying for Jackson's medical needs.

Darren added: "The longer I get with Jackson, the better.

"But sometimes, on really tough days, I feel like his quality of life is so bad, and he's missing out on all the good stuff.

Despite that, I never want to lose him, and I want everyone to know who Jackson is and for his sister to always remember him, even in years to come."