A HELENSBURGH schoolboy living with an incredibly rare genetic condition which leaves him especially vulnerable to Covid-19 has stunned doctors – and his parents – by beating the disease.
Mackenzie Cameron, a pupil at Colgrain Primary, suffered two cardiac arrests, and four respiratory arrests, during a torrid eight-week stay in hospital after he tested positive for Covid between Christmas and New Year.
But after nearly a dozen negative tests confirmed he no longer had the disease, 11-year-old Mackenzie was allowed to leave the Royal Hospital for Children in Glasgow and return with his parents to the family’s Cardross home at the end of February.
And dad Richard and mum Kelly have this week hailed their “superhero” – and admitted that they can’t quite believe they still have the same wee boy at home with them as they did before Christmas.
The Advertiser first told Mackenzie’s story back in February 2018, when we described how Kelly had been told, while she was still pregnant, that he was likely to have the same genetic condition – autoimmune enteropathy (AIE) – that had claimed the life of the couple’s first child, Caitlin, in 2007, a diagnosis that was confirmed shortly after Mackenzie’s birth.
Mackenzie’s form of AIE causes morbidities of the digestive tract and resulting malabsorption of food, and means that he’s spent almost all his life being fed by means of ‘total parental nutrition’ (TPN), or intravenous feeding.
But his Covid battle was entirely unconnected to his existing condition.
“It’s been a bit of a hellish few months,” Richard admitted.
“Mackenzie had actually been doing really, really well – he hadn’t been in hospital for about a year and had been off his TPN and on gastrostomy feeding.
“In September he was back in hospital for a while with an issue with his gut, and in October he went back on his TPN.
“He got out of hospital, then was back in for about three weeks in December, and got out again about a week before Christmas.”
By then, though, Covid had reached the family: first Richard, who had been dashing between work at Ellie’s Cellar in Helensburgh and the RHC in Glasgow, stopping only at a supermarket for food to eat on the journey, tested positive and had to self-isolate at home, and then Kelly did likewise.
And then, in the week between Christmas and New Year, Mackenzie picked up a mild fever. His nose, throat and airways began to get congested, and he was unable to cough it up.
A 999 call and two visits to the RHC later, hospital staff decided to keep Mackenzie in for observation – the start of a traumatic eight weeks both for him and for the rest of the family.
“He ended up testing positive for Covid,” Richard continued.
“On the Wednesday a chest X-ray said his lungs were clear. But by the Friday, a day and a half later, they X-rayed him again and his chest was completely blocked off on one side – and by the Monday he was on a ventilator.”
Twice doctors thought Mackenzie’s condition was improving enough that they could remove his breathing tube. And both times – the first time after just a few moments, the second the following morning – he deteriorated rapidly, his airways became blocked, and he suffered a respiratory arrest and a cardiac arrest.
“His doctors were worried that Mackenzie might have suffered brain damage,” Kelly said.
“The morning after his first arrests, I walked into his room and his eyes opened – he must have heard my voice. I asked him to move his hands and feet, and asked him if he knew who I was, and thankfully he did.
“The second time he was back on the ward, and the tube came out with no problems. I got him up the next morning to get him changed, and he coughed – and I knew straight away that something had blocked his airway.
“His lips were blue and his saturation levels had dropped again, and after about 40 minutes, his consultant said Mackenzie had had another respiratory arrest, which led to another cardiac arrest.”
The third attempt to remove Mackenzie’s breathing tube was much more successful. And again his doctors confirmed that he had suffered no brain damage.
“A nurse told us ‘I can’t believe your boy – he’s sitting up there, chatting away, asking for his iPad, and he’s absolutely fine’,” Kelly said.
“He was in hospital for about eight weeks. For six of those he was in intensive care. He ended up having four respiratory arrests and two cardiac arrests.
“I told Richard that I couldn’t believe all this had happened twice and we ended up with the same wee boy we brought in.”
The only side-effect of Mackenzie’s lengthy stay in hospital was that he lost some of his physical mobility – but Richard and Kelly, and Mackenzie’s big sister Naomi, who ironically caught Covid while the rest of the family was in hospital, have been working on improving that by taking him for walks close to home, going a little bit further every day to build up his strength.
In the past week, Richard and Kelly have both received their first Covid vaccination - but because Mackenzie’s immune system is so vulnerable, the family doesn’t yet know when, or even whether, it’ll be safe for him to get the jag too.
“We’ve always known that something could happen to Mackenzie that could end his life,” Richard said.
“And I guess we always will know that. But we’ve always presumed that it would be related to his gut, because that’s what he’s been dealing with his whole life.
“He’d never had a chest infection until now. Despite his condition, he’s not actually prone to catching colds.
“He’s the same wee boy he was before – which, to us, is a miracle. The ICU staff were amazed by him - he’s our superhero.”
The family normally goes on holiday to Florida in the late winter – in fact, last year they flew home the day before Florida effectively shut down as the scale of the pandemic became clear – and this year, holidays to anywhere have been an absolute no-no for the Camerons, just like everyone else.
“As soon as the jag becomes available to Mackenzie, he wants to get it,” Kelly said. “He keeps wanting to know when all this is going to go away, and when he can get the jag so that we can go on holiday.
“As soon as Mackenzie heard he was Covid positive, he said ‘mum, I’m not going to die, am I?’ - because that’s all everybody talks about.
“That’s all you hear when you listen to the news or watch it on TV. So I’m not surprised that’s the question he was asking.
“But at the end of the day I just feel so amazed that Mackenzie has come through it all.
“When we were going through it all, I did find myself asking ‘why is somebody up there doing this to us?’.
“But if there was someone up there who was doing this to us, then someone up there was definitely looking after him too.”
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