Young James Robertson was a happy, healthy lad at the start of the year.
If someone told him 2017 would see him have two brushes with death and be the only child in Scotland fitted with a special device to keep his heart beating he would probably have laughed.
The 10-year-old St Margaret’s Primary School pupil, who had hardly ever been sick, let alone seriously ill, was struck down by a virus in February and diagnosed with Myocarditis – a disease marked by inflammation and damage of the heart muscle which usually attacks otherwise healthy people and can be caused by viral infections and adverse reactions to medications.
Showing signs of heart failure, James spent the next fortnight in intensive care fighting for his life.
When the Polmont youngster had recovered enough to be sent home, with significantly reduced heart function, he went back to school and everything seemed fine until the first day of the school summer holidays – July 5 – when he suffered a heart attack.
Once again close to death in intensive care at Glasgow Children’s Hospital, James was flown down to Great Ormond Street Hospital in August to undergo major heart surgery.
He and his family were told 50 per cent of his heart had been so badly damaged by the initial infection he now required a heart transplant.
James, who is now on the transplant waiting list, was fitted with a HeartWare device – only the 11th child in Great Ormond Street and the first Scottish youngster to be fitted with one – to support his weakened heart while he waits for the life-saving call that brings his vital organ donation.
Now back on the long road to recovery, James is staying down in London at Great Ormond Street with his family, parents Stuart (44) and Lisa (34) and little sister Kayliegh (6).
Stuart said: “We are taking it day by day and staying strong for James. That’s the one thing we can control, staying in the here and now. After he had the heart attack, we thought we had lost him.
“The worst thing after that was seeing all the torture he has had to go through to get to this stage he is at now. He was bedridden and suffering hallucinations as he withdrew from the drugs he had to be on.”
Both Stuart and Lisa are being trained up on the HeartWare system keeping their son alive and Great Ormond Street team members have visited St Margaret’s Primary School in Polmont and James’s GP to get them up to speed on the device.
The HeartWare system requires an electricity supply to work, either connected to the mains or a portable power pack.
At the core of the system is a pump called a left ventricular assist device and Stuart – who has featured in The Falkirk Herald before for his toy photography of Star Wars characters and superheroes – likened it to the chestpiece which keeps Marvel’s Iron Man alive.
“The HeartWare device is something Tony Stark would be proud of,” said Stuart. “It’s basically a pump. If you put your ear to James’s chest you can hear it go woosh, woosh, woosh.
“When James gets home he will be the only child in Scotland fitted with this. His spirits are definitely up and he is getting stronger and is starting to walk again – we take him along to the canteen for lunch now.
“He is incredibly determined and he really pushes himself to get better because he misses home so much. So do we – we just want everyone back home. None of us have been back home in over two months.”
Surgeons let the family meet a girl who had been fitted with a HeartWare device in April – the 10th child to receive one at Great Ormond Street, just before James got his in August.
Stuart said: “She was a fantastic little girl. I was blown away by how healthy she was. It was quite inspiring for us. Our goal at the minute is to get James home and back to some kind of normal life, but the ultimate goal is for him to have a transplant.”
A keen supporter of organ donation before this situation, Stuart would encourage as many people as possible to sign up to the donor list because it really can save lives.
“The phone call could come at any time,” he said. “If a call came just now we would obviously go for it, but ideally we would want James to be as strong and healthy as possible before he undergoes the transplant.”
Both Stuart and Lisa’s workplaces and James and Kayleigh’s primary school have been very supportive of the family’s situation.
Lisa’s colleagues at Newton Primary School and Nursery Class in Dunblane have set up a Just Giving page to help the family meet the costs of temporarily relocating to London so they can all be with James.
Stuart said: “Friends and family and our employers have been nothing short of phenomenal for the support they have given us. Our Just Giving appeal has almost reached our target of £4000.
“We just need to live down here in London until we have received the training on the HeartWare device. James is being kept up to speed with what his friends are doing at school and a teacher comes in to see him every day in the ward.
“We are going to see if we can find a school Kayleigh can enrol in down here for a month or so. We just don’t know how long we are going to be down here – it could be until the end of the year.”
Visit www.justgiving.com/crowdfunding/Jamesrobertson to donate to the cause.