Emotional videos show how a terminally ill son's face lights up when his loving dad sings and cradles him.
Jackson Garwood, six, was diagnosed with Krabbe Disease when he was one, and his parents Darren and Rebecca were told he likely wouldn’t live past two.
Heartbroken, they watched him lose all the milestones they had celebrated in their first-born, as he stopped talking and his movements got less and less.
Now Jackson needs to be tube fed, but his family have learned to live and love moment by moment.
And one of his favourite things - something he still enjoys - is cuddling up with his dad who sings to him.
Adorable videos shows Darren, 39, sings Jackson’s favourite songs, including 'Brighter Than the Sunshine' by Aqualung, 'Talk Tonight' by Oasis, and 'It's All About You' by McFly.
Darren, from East Tilbury, Essex, said: “It is a joy to live with Jackson.
"When you put him on your lap and give him a cuddle, he just loves it.
"I always sing his favourite songs. You feel him sinking into you, going soft like plasticine, and his breathing goes in time with yours.
"It feels like you become one person.
"He loves to feel your skin and your hair, and he does a special little smile that only we recognise, just a little movement of his mouth to the right.
"When we were told his diagnosis, it was such a whirlwind.
"I had always been such a bouncing person who loved talking to people and I became suddenly miserable.
"It’s really difficult, because he’s my boy and I want him to be here forever, but then I look at his quality of life sometimes and think that isn’t good for him.
"We just make every day as beautiful as we can.
"I get one go at this, and I have a choice about whether I am miserable, so I have made a choice to be happy until the day I pop off, and I would give up those years before I had him for a day with Jackson."
Jackson's condition means his body doesn't make the protective material, called myelin, around his nerves, so his mental and motor functions have declined through nervous system degeneration.
About one child a year is affected in the UK, and life expectancy is around two years.
Jackson has seizures and muscle spasms, and finds it difficult to swallow and cough.
It is even hard for Jackson to smile, so the joy of these singing cuddles is so important for Jackson, his parents, and his three-year-old sister, Seren.
Jackson weighs only 21 pounds, just over half the average weight of a six year old boy, even though his seventh birthday will be in August.
Darren and Rebecca, 36, reads him up to ten stories every day, because hearing is one thing the little boy has left to enjoy.
Jackson's family have raised money for his care by sponsored walks, including buying a hyperbaric oxygen chamber for £13,000 to ease nerve pain.
This year, Darren and four members of his family and friends will walk around 68 miles from the start of the Thames in Kemble, Gloucestershire, to Oxford to help buy a hydro-pod so Jackson can sit in the bath.
Darren, a highways clerk, has published three books in the series 'Jackson Superhero' with the fourth planned for September, and all the money goes towards Jackson's care.
In the books, superhero Jackson has powers in the night but not during the day.
Darren said: "All the stuff we buy has 100 per cent helped Jackson live longer.
"It's worked for kids in other countries too. We were told he wouldn't live past two, and I believe he's the first in the UK to have done so, but I know of another child in the US who is seven.
"The books are a kind of legacy to Jackson. When my other children are older, I want them to walk through shops and see their brother.
"I wanted to help Jackson dream that Jackson could secretly do all these things in the night that he can’t do in the day. I also like the idea that he is doing all this stuff when we think he is sleeping.
"All children have stuff they can’t do, or wish they could do better, so the books work for all of them.
"The seat we need for the bath would cost £50 for most kids, but it's more expensive for Jackson because it has to be moulded to his spine to stop him collapsing."
Jackson's fundraiser can be found at: https://www.justgiving.com/crowdfunding/darrengarwood?utm_source=offline&utm_medium=qrcode&utm_term=QQB3rYVvD
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