David, known to everyone as Dee-Dee, spent his final Christmas four years ago battling for his life in hospital with his presents waiting for him at home.
Tragically Dee-Dee, who was autistic, died on New Year’s Day in 2015 due to complications following bowel surgery and doting mum Lee Clark, 39, can't bear to part with his pile of gifts.
“Dee-Dee absolutely loved Christmas,” Lee, from Lisburn, Northern Ireland explains.
“He had autism and epilepsy, so he was a studious little boy, very soft-hearted. He liked making lists.
“When the Smyths Toys catalogue came through our letter box each autumn, Dee-Dee would hurry off to the sofa to spend hours studying it, ticking off everything he wanted with a red pen.
“He was always asking me how many more days until Santa comes, and then marking them off on his calendar.
“He liked to leave out a special surprise for Father Christmas – a can of beer alongside the usual carrot and mince pie!”
Dee-Dee had struggled with his weight all his life, and one of his medications, Risperidone, had the side effect of giving him a huge appetite.
By the time he was 10 he weighed around 9st.
He also struggled to go to the toilet – a common problem with autistic children – and suffered frequent bouts of constipation because he tried to hold it in.
After a family holiday to Portugal in May 2014, Dee-Dee’s GP prescribed laxatives to make the schoolboy more comfortable.
But by the autumn he had developed an impaction in his bowel and was struggling with stomach pains.
On December 10, Dee-Dee was admitted to Belfast’s Royal Victoria Hospital for Sick Children for an op called an ACE procedure – Antegrade Continent Enema.
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“As he was wheeled down to theatre, he asked if he’d be home for Christmas,” Lee remembers.
“I told him of course he would. He was only meant to be in hospital for a couple of days.
“But after his surgery Dee-Dee was subdued and miserable. He ended up in ICU with fluid in his abdomen – his wound had become infected.
“On December 16, instead of taking Dee-Dee home for Christmas, we were facing more surgery. He’d developed a kink in his bowel and a second obstruction.
“I felt like I was literally watching my cheeky boy fade away, right before my eyes. All because of constipation.”
Lee had started her Christmas shopping back in September and with each extra gift she squirrelled away she felt she was giving him another reason to get better.
“Christmas Eve was a hellish night,” she says.
I felt like I was literally watching my cheeky boy fade away, right before my eyes
“I sat at Dee-Dee’s hospital bedside as he tossed and turned, whimpering in pain as his temperature soared.
“On Christmas morning I sent a text to my sister Sam, asking her to send a photo of all Dee-Dee’s presents. There were far too many to bring into hospital, so Sam lined them all up on my sofa.
“Luckily they hadn’t been wrapped, because gift wrap stressed Dee-Dee out too much with his autism.”
Lee’s front room looked like a toy shop, with Power Rangers and Turtles action figures, computer games, books, puzzles, model cars and a giant remote control T-rex.
“I showed the photos to Dee-Dee, telling him they were all waiting for him at home,” she remembers.
But Dee-Dee’s condition was deteriorating, and Lee was warned her son was becoming critically ill with sepsis.
On December 30 and 31 he underwent further surgeries as medics fought to save him.
Lee says: “As 2015 rolled in, I sat at his bedside singing ‘You are my sunshine, my only sunshine.’ But at 9am on New Year’s Day he was wheeled away for a CT scan.
“The look on the neurologist’s face afterwards told me everything I needed to know.
“I slid down the wall and crumpled to the floor of the hospital corridor.”
Dee-Dee had suffered a cerebral edema (swelling in the brain) as his organs failed. As the world celebrated the start of a new year, Lee had to make the agonising decision to turn off her only son’s life support.
He’d never get to play with that pile of presents that she had so lovingly chosen.
“Heartbroken, I decorated Dee-Dee’s grave with all the things he loved, including his favourite red Power Ranger mask,” says Lee.
What is autism?
Autism spectrum disorder (ASD) is an incurable, lifelong developmental condition that affects how people perceive the world and interact with others.
It affects around one in 100 people in the UK and is three to four times more common in boys than in girls.
Many people with ASD find it hard to understand other people's feelings and emotions, and they may have difficulty holding conversations.
When they are young, their language development may take longer and they can struggle to use facial expressions, using gestures to communicate instead.
They may also find it hard to connect with other people and to hold eye contact with unfamiliar individuals.
Many children with ASD like to follow a routine, and changes to this can cause distress.
High functioning autism is an informal term some people use to describe those on the autism spectrum disorder.
“On Saturdays I took up bags of jelly snakes sweets and Wotsits, because Saturday used to be our treat day – the only time I relaxed his healthy eating regime.
“And as his 11th birthday came and went, I released red balloons on his favourite beach.”
An inquest over three years later in June 2018 found that Dee-Dee died as a result of complications from his bowel surgery, leading to a severe infection and multiple organ failure.
I turned off my son’s life support and all of a sudden I wasn’t a mum anymore
Lee began reaching out to other parents of autistic kids struggling with toilet issues, believing many parents are too embarrassed to seek help.
“Christmas is cancelled for me now, I don’t even bother putting up a tree,” says Lee.
“I didn’t just lose Dee-Dee; I lost a part of myself. I turned off my son’s life support and all of a sudden I wasn’t a mum anymore.
“But my boy’s generosity lives on. I’ve raised thousands of pounds for Park View Special School in Lisburn, where Dee-Dee started nursery.
“And I’ve sent donations to Africa. One cheque for £1,000 helped to feed 48 families.
“Christmas is a time for giving, and I know my big-hearted Dee-Dee would have approved.”
There are around 700,000 people on the autism spectrum in the UK – that’s around one in every 100 people. We recently told how I'm A Celeb's Anne Hegerty finally met the 11-year-old autistic boy who wrote her a heartbreaking letter during her stint in the jungle.
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