When Cooper Fittall was born seriously ill, doctors told his parents to prepare for the worst.
Little Cooper weighed just 2lb 6oz when he was born with only one kidney and a damaged liver.
He was delivered by an emergency caesarean section at Aberdeen Maternity Hospital seven weeks early and was too sick to go home.
His heartbroken mum and dad said the saddest of goodbyes.
But that was 18 years ago – on December 23 2004.
And after marking his birthday yesterday, their “cheeky chappy” son will be a big part of the family Christmas celebrations tomorrow.
“He was in hospital for the first five months,” dad Eddie, who lives near Boyndie, in Aberdeenshire, explains.
“It was awful, but after two or three months in the hospital you just got used to it.
“Machines started beeping and you just went and reset it because he had just moved.”
‘We had to say goodbye to him’
Doctors discovered Cooper was battling several serious medical issues but at the time couldn’t figure out the cause.
“We had to say goodbye to him about four times because they thought he wasn’t going to make it,” Eddie says.
“He was only meant to live for a few days initially, then weeks, then months.”
Parents Nicki and Eddie were told before Cooper was born that he was going to be a small baby with short arms and legs.
But within weeks of his birth he was diagnosed with a Cleft palate, scoliosis, bone marrow problems and narrowed arteries of the heart and lungs.
“Everything was done for him, he couldn’t do anything,” Nikki, 50, explains.
“He was five before he started to walk. He’s never eaten; he’s always been fed through a tube.
“He’s totally deaf and nonverbal.”
‘We treat each day as his last – tomorrow could be his last day’
Various medical tests were carried out over the years in the hope that doctors could determine the cause of his condition.
Then, when he was around 12-years-old, the genetics department at the hospital discovered that he had a faulty LMBRD1 gene.
It’s a rare condition and he is one of only 10 people around the world who suffers from all the symptoms.
The diagnosis meant that Cooper could start receiving intramuscular injections as part of his treatment.
But there’s still so much unknown about their boy’s rare condition, and life is filled with uncertainty for mum-of-four Nicki and her ex-husband.
“I still treat each day as the last,” Nicki, who lives in Whitehills in Aberdeenshire, said.
“You give him a big hug and a big kiss when he goes to bed because you don’t know if he’s going to wake up.
“Tomorrow could be his last day. We don’t know and the health professionals don’t know either.”
Boy with rare condition: ‘At the moment his health is good’
Cooper is only 1m 34cms tall (4’4”) and is not expected to grow any taller due to having a low growth hormone.
His mum says he’s the size of a 10-year-old.
Nicki and Eddie are amazed that their little boy has turned 18.
He’s come through a lot over the years and still receives treatment.
Five years ago Cooper had a spinal fusion operation which involved two titanium rods being inserted into his body to straighten up his back.
He also attends appointments with specialists from different departments at the Royal Aberdeen Children’s Hospital who keep regular checks on his condition.
His parents say NHS staff have been “fantastic” over the years and appreciate all the help they have given him.
“At the moment his health is good,” Eddie, a self-employed gardener, explains.
“He’s been okay. But we just don’t know if anything’s going to flare up anytime or something new is going to happen.”
Turning 18 is a big step up in the world for Cooper, who will finish his classes at Banff Academy at Easter.
He loves swimming and also enjoys spending time with his family, learning a bit of the Makaton signing language over the years to communicate.
“His nieces and nephews all know that he can’t hear or speak so they just tap him to get his attention and they all wave at him,” Nicki says.
“He’s mad about penguins and Happy Feet.
“If his penguin is on the floor they’ll give it to him and they will sign thank you.”
Nicki says it’s clear to anyone who meets him just how content he is with his life and he also cheers people up when they see him.
“He’s a very happy little boy,” Nicki says. “That’s what everyone says when they meet him.”
Bringing up a boy with a rare condition has often been challenging for his parents but they say it’s given them more empathy towards other people.
When they see another child screaming in a supermarket it’s just a reminder that they could also be suffering with their health.
‘You just take each day as it comes’
The family planned a party for Cooper’s 18th birthday party at The Seafield Arms in Whitehills.
It was a special day that his parents did not think would ever happen.
“It’s scary for the future when we’re not about, what will happen to him,” Eddie, 53, says.
“But his sisters said that they will have him, they will look after him.”
Nicki adds: “For us, Cooper is just Cooper. You just take each day as it comes.
“Cooper’s just our little boy and we just get on with it.
“He still has numerous medical problems and is very little for his age.
“But he is so happy and very loved.”
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