LORRAINE Orange took great care to protect her family when the pandemic broke out – her son, Oakley, is clinically vulnerable due to an extremely rare condition.
But the mum-of-five, 53, couldn’t have imagined the virus would end up leaving another of her children with a debilitating illness: long Covid.
Long Covid is poorly understood at the moment, but it’s been found to affect many different organ systems including the lungs, brain and skin.
The Office for National Statistics estimates that around one million people in the UK were living with long Covid in June – of those, 33,000 were children.
ONS data also show that around 10 per cent of kids aged 2-11 and 13 per cent of those aged 12-16 report at least one symptom five weeks after a positive Covid diagnosis.
Most children who catch Covid have mild or even asymptomatic cases.
But that’s small consolation to the parents who’ve seen their happy, healthy children completely debilitated for months with long Covid.
And with lockdown restrictions lifting this week, experts and parents fear more unvaccinated children across the country will be at greater risk of developing the harrowing illness.
‘Am I going to die?’
All six members of the Orange household in Strood, Kent, caught Covid in January.
The kids were already being taught from home since November to protect Oakley, 14, left vulnerable by Stevens-Johnson syndrome – a severe adverse reaction to medication which causes skin to peel off, and can ultimately be life-threatening.
The family took extra precautions to keep Oakley safe – meals were left outside his bedroom, and they even wiped down the door after knocking.
But the whole household, including Oakley, caught Covid anyway.
“All he had was a day of a headache and a bit of a temperature and that was it,” Lorraine tells The Sun.
But youngest child Tilly, 13, became extremely ill with the virus.
“We ended up having to call the ambulance out to her because her heart rate was off the scale,” Lorraine says.
“She was so scared. She did say to me: ‘Am I going to die?’ I’ve already had that with my son saying that to me.
“I didn’t expect to have to go through that again with any of my kids – but that’s how bad she felt.
She’ll walk to the toilet and then she’s had enough. That’s how bad it gets on some days.
“And now, she just hasn’t got better.”
Six months after falling ill, Tilly’s heart rate still rises if she stands up and she suffers extreme fatigue, with teachers calling Lorraine to collect her from school after just two 40-minute lessons due to exhaustion.
Tilly has also lost nearly 10kg since February due to food continuing to smell and taste strange, putting her off meals.
And she also still suffers swelling in her extremities, hives, and has problems with her eyes and hearing.
On bad days, Tilly has to be alone in her darkened bedroom – Lorraine put up blackout curtains in the girl’s room as light was making her headaches worse.
“She was my most active child,” Lorraine says. “She did horse riding, trampolining, cycling, sports – she was always active.
“Now she doesn’t do anything. She just doesn’t do it. She’ll walk to the toilet and then she’s had enough. That’s how bad it gets on some days.”
‘I want my child back’
Tilly’s paediatric GP referred her to a consultant – but Lorraine says even they told her that they didn’t really know what long Covid is doing to children.
“With our daughter, seeing her how she is now, it’s awful,” Lorraine says. “Absolutely awful. You feel totally helpless.
“I’ve been in the totally helpless brigade before with Oakley and watching him virtually slip away before my eyes.
“And then having to go through this… It’s devastating.
Lorraine is also fearful about what restrictions easing will mean for children across the UK.
Our kids need help. They need recognition for what is going on.
“People are so blasé about it,” she says. “They say: ‘It won’t matter because they’re only kids, they don’t get it bad.’
“Well come and live my child’s life for a day and see what she’s like.”
Last month, the NHS unveiled a £100m plan to create paediatric hubs for children with long Covid, which Lorraine is now hoping Tilly will be referred to.
“We will travel anywhere,” she says. “Our kids need help. They need recognition for what is going on.
“And what the government are doing is just throwing kids to the lions. I can’t put into nice terms how I feel about that.
“I want my child back. I want my happy, active child back. I don’t know how to do that. I don’t know where to go to get that help.
“‘Time’. That’s what I was told by the consultant. ‘This will get better, Tilly, it will just take time.’
“But how much time?”
‘She had to crawl’
Sammie Mcfarland and daughter Kitty, 15, both caught Covid in March 2020.
They both had “mild infections” followed by a recovery period at their home in Dorchester, Dorset.
But around five weeks after their infection, Kitty started having chest pains and heart palpitations.
“We were pretty much bed-bound for eight months,” Sammie, 45, tells The Sun.
In that time, Kitty couldn’t even support her own head to sit up, and was have to eat her meals in bed.
“She was weak and floppy,” Sammie says. “She had to crawl along the floor to get to the toilet.
“She couldn’t shower. She’d previously been fit and healthy.
“She’s a ballerina and liked her gymnastics, aerial trapeze, things like that.”
These are not small symptoms which should be brushed aside.
Her gruelling list of symptoms include heart palpitations, chest pains, dizziness, fainting, insomnia, brain fog, and fatigue.
Even now, 17 months on, Kitty has to plan resting time before and after activities to recover.
“It’s a very small way of living compared with how we used to live,” Sammie adds.
Last year, a nurse suggested to Sammie that Kitty’s symptoms could be explained as anxiety, which rocketed in children during lockdown.
“I was like: ‘She’s crawling along the floor to get to the toilet,'” Sammie says. “‘This isn’t anxiety. It’s much more serious.'”
Feeling isolated, Sammie decided to reach out to other parents to see if they were going through what she was experiencing with Kitty.
That’s how she started Long Covid Kids – a support and advocacy group.
“We have children who have been consistently ill from day one who’ve never had a break,” Sammie says.
“We have children who’ve got this relapsing and remitting pattern. We’ve got children who’ve got clusters of symptoms that come and go – we’ve got others who have just one symptom at a time that goes and then they get a different symptom.
“This is why it’s so difficult and I suspect it’s not as well diagnosed as it should be.”
She says some symptoms kids report are even more sinister than Kitty’s case, with some including paralysis, nerve pain, and seizures.
Until the schools are safe, we’re not going to reduce long Covid in children.
“We’ve got children who are having to be tube fed,” she says. “These are not small symptoms which should be brushed aside.”
With lockdown restrictions set to ease, Sammie says robust mitigation measures should be introduced into schools including CO2 monitors, HEPA air filters, and training on how to use such equipment.
“I think we’re heading towards an absolute tidal wave of chronic long-term health issues in children, and it’s unnecessary,” she says.
“Until the schools are safe, we’re not going to reduce long Covid in children.
“We’re not saying that everybody should be fearful of sending their child to school – what we’re saying is that everybody should have evidence-based information so they can make their own decisions.”
‘Let’s try to mitigate’
Long covid in children is proving to be challenging for clinicians too.
Danilo Buonsenso, a paediatrician at the Gemelli University Hospital in Rome, led the first attempt to quantify long Covid in children.
His study, published in a peer-reviewed journal in April, found that over a third of kids diagnosed with Covid-19 had at least one or two lingering symptoms four months after infection.
“Milder cases lasting four to 12 weeks with less severe symptoms may be more frequent, five to 10 per cent I’d say,” Dr Buonsenso tells The Sun.
Let’s research on long covid diagnostics and treatments to better cure the kids to come.
Dr Danilo Buonsenso
“However, as I said, only a minority last longer and represent the most severe spectrum.”
Dr Buonsenso that even though acute cases are rarely severe, we should still follow basic practices to minimise the spread of infection like isolating if we have symptoms and getting vaccinated where possible.
On the question of restrictions being lifted, Dr Buonsenso says it’s a “difficult decision” which has to balance “so many aspects”.
“Most probably, less restrictions will mean some more cases, and therefore some more MIS-C [multisystem inflammatory syndrome in children] and long Covid, but the decision must balance all things, not only focus on these conditions.
“Unfortunately a disease-free world is not achievable.
“I would conclude saying let’s try to mitigate according to a perspective that considers global wellbeing and let’s research on long covid diagnostics and treatments to better cure the kids to come.”
The Sun contacted the government for comment.