Every time this five-year-old boy begs his parents for more food they have to make the heartbreaking decision not to give into his demands or risk killing him.
Aaron Hunter is battling a rare and life-limiting illness which means he never feels full.
He now weighs more than six stone and his loving parents have to restrict him to just 800 calories a day.
He’s one of only four children in the country to suffer from ROHHAD syndrome which causes previously healthy youngsters to gain weight and have breathing difficulties, as well as other problems.
His parents Elisabeth, 35, and dad Ian, 39, say Aaron, who is hooked up to oxygen, suffers taunts and abuse from strangers in the street over his weight.
In a bid to raise awareness of Aaron’s illness, big sister Lauren, 10, has recorded her own song and performed live on last night’s The Riverside Show on STV Glasgow.
Lauren teamed up with Louise McFarlane from Singer Station performance school, which she attends, to record the song Light The World For You.
She has also been helped by producer Greg Friel, with backing vocals provided by fellow Singer Station students.
Mum Elisabeth, from Alexandria, Dunbartonshire, was overwhelmed when she first heard the song.
She told the Scottish Daily Record: “It is beautiful and emotional. It sums up exactly how we feel about Aaron and other ROHHAD children.
“I can’t wait for it to be released and for everyone to hear it.
“People think Aaron eats too much and that’s the reason he is clinically obese but they have no idea he is coping with a serious illness.
“I’ve been called a bad mum by strangers because my son is overweight.
“It’s cruel and hurtful, but hopefully through Lauren’s song people will realise what Aaron is dealing with.
“What Lauren, Louise and Greg have done for him and the other children is amazing.
“We are truly grateful for their support and dedication to Lauren’s plan to help her brother.”
Aaron was a perfectly healthy and happy boy full of energy and it wasn’t until two and half years ago that his parents first noticed something was wrong.
Elisabeth said: “He was always running around. We could hardly keep up with him but over a few days I noticed a difference.
“Before he would just pick at his food but now he was finishing meals then asking for more.
“He couldn’t get enough food and we knew something wasn’t right.”
Aaron was slightly underweight when the symptoms began to show so doctors weren’t too worried and kept an eye on him.
However, he continued to rapidly put on the pounds, despite Elisabeth resisting his demands for food.
He was also more tired than he had been but when Aaron suffered bowel problems alarm bells started ringing.
Elisabeth said: “Within six months, he more than doubled his original body weight.
“He went into hospital for tests for various things but all came back negative.
“They also did an MRI scan, which was clear. They were honest with us and said they were looking for a brain tumour but we were thankful they didn’t find anything.”
Doctor Guftar Shaikh, the paediatric endocrinologist at the Royal Hospital for Children in Glasgow, was heavily involved in Aaron’s care early on and continues to play an important part in his treatment.
He admitted Aaron to hospital for a week to run a host of tests. His diet was also closely monitored during this time – but he was still gaining weight.
It wasn’t until Elisabeth and Ian took him into bed one night that they noticed problems with his breathing.
She said: “It sounded like he was getting a chest infection. He would breathe rapidly and shallow and then he would pause.
“We took him to the out-of-hours clinic a few times only for doctors to listen to his chest and say he’s fine.”
But her maternal instincts kicked in and, having been given advice from a friend who is a nurse, Elisabeth filmed Aaron during the night to illustrate the concerns over his breathing and showed the footage to Dr Shaikh.
Elisabeth also looked up Aaron’s symptoms online and soon learned about ROHHAD.
She said: “I wasn’t convinced it was a real condition but the doctors said they were considering it as a diagnosis.
“He went to Yorkhill for assessment. It was supposed to be for a week but he ended up in the whole summer of 2013.
“They told me, ‘You saved your son’s life’ and explained that in another few weeks or couple of months he would have suffered a cardiac arrest because he wasn’t breathing properly.”
In July last year, Aaron was admitted to intensive care with pneumonia and had to fight to survive.
Elisabeth added: “He’s lucky to be alive and he’s been through so much and has to use a ventilator at night to help his breathing. He’s spent most of the last two and a half years in and out of hospital but he’s such a happy wee boy and is always smiling.
“He knows he can’t eat and eat and we use a lot of distraction techniques to take his mind off feeling hungry.
“He has a strict diet and we make sure he has lots of healthy food. He does get the occasional treat but it’s only on special occasions such as his birthday.
“We also try not to eat snacks in front of Aaron as it’s not fair on him.”
She added: “Being told my son has an incurable condition that will put his life in danger takes away what little hope you have that they’re going to find something they can fix and get Aaron back to the wee boy he was.”
Elisabeth and Ian launched the ROHHAD Association to raise awareness of the syndrome, of which there are 100 confirmed cases worldwide. They hope to push for research into the complex condition which is generally ignored because it is so rare.
Elisabeth said: “We want to let the world know what these children are fighting through daily just to live.
“We also want to raise awareness for medical research.
“If research is done, Aaron’s quality of life could improve. I’m not saying we will find a cure, although we are hopeful, but even if it raises a bit of awareness it is worth sharing Aaron’s story.
“We don’t know what the future holds for Aaron but if I lose him I don’t want to feel like I didn’t do all I could to fight for him. It’s a life-changing and devastating diagnosis.”
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