As a lively 11-year-old, Louise’s son loved riding his bike, building outdoor dens, and swimming in the sea near his home on England’s south coast. But then COVID struck.
He has since spent most of the last three years housebound with long COVID, needing a stairlift and wheelchair to get around when not bedridden.
Single mum Louise tried to juggle her career in marketing with caring for her son, but eventually had to give up the job she loved.
“My savings have long gone. I’m maxed out on my overdraft and have debts,” said Louise, who withheld her full name to protect her son’s privacy.
Now 14, her son is among more than 111,000 children with long COVID in Britain, according to official data from 2024, suggesting there are millions worldwide.
Five years after the World Health Organisation declared a pandemic, these families feel invisible.
Symptoms vary but can include extreme fatigue, heart problems, breathing difficulties, cognitive issues and joint pain.
While some children recover, others face life-changing conditions which threaten their education and futures.
QUITTING WORK
Sammie McFarland’s daughter Kitty became so sick her parents feared she might die. The family ended up selling their home to pay for treatment.
McFarland, who set up the charity Long Covid Kids (LCK) in 2020, said caring for a child with the condition was often equivalent to a second full-time job.
LCK, which now supports more than 11,000 families – predominantly in Britain, but also in countries including Canada, Greece, Italy and the United States – regularly hears of parents having to quit work.
The burden is particularly heavy for single parents. One mother sent her sick son to live with her parents in the Caribbean to avoid losing her job.
Louise does not know if life will ever return to normal. “It’s such a scary thing to go through,” she said.
“Sometimes my only release has been to get outside to walk the dog and shed a few tears. When I get home I have to just stay super positive for my son.”
She estimated long COVID had so far cost her more than £90,000 ($116,600) in lost income, medical costs and other expenses. No longer able to make pension contributions, it will continue to impact her financially for the rest of her life.
HEALTH INEQUALITIES
Britain’s National Health Service (NHS) is free at the point of use, but all nine parents interviewed had been forced to pay for private treatment.
NHS paediatric long COVID clinics set up during the pandemic mainly offered non-medical therapies and are now being disbanded.
Families who can raise the funds are paying for private consultations, tests and off-label treatments which are showing promise.
McFarland said parents accessing private healthcare often reported improvements in their children, while others felt increasingly hopeless.
“The health inequalities are vast,” McFarland added. “In 10 years’ time we’re going to clearly see these inequalities play out in the trajectory of these young people’s future independence and work opportunities.”
The government has expressed alarm at a rapid rise in the number of children out of school since the pandemic and is keen to get them back in class. But parents are deeply frustrated that there is no recognition that many are sick with long COVID.
McFarland said an increasing number of families were being accused of faking or somehow causing their children’s symptoms with dozens threatened by local authorities with having their children placed in care.
“It’s an absolutely catastrophic repercussion of the lack of … public awareness,” she added.
The lack of recognition has also complicated access to social welfare benefits. LCK said claims were often rejected forcing parents to go through stressful appeals.
CLEAN AIR IN SCHOOLS
The charity will submit evidence to Britain’s ongoing COVID inquiry in the autumn, when it examines the pandemic’s impact on children.
LCK wants greater investment in research and better air filtration and ventilation in schools to reduce the spread of the virus.
Multiple infections can increase the risk of a child developing long COVID, while any viral reinfection can trigger a relapse in those already affected.
In Scotland, Jennifer Robertson is home-schooling her 12-year-old son Fergus to minimise the risks. But that did not prevent him getting COVID for a fifth time at Christmas, undoing months of progress.
“It’s heartbreaking, frustrating and really stressful,” Robertson said, adding it was impossible to know when the virus was circulating because no one tested any more.
Robertson, a marine scientist, has gone from pillar to post to find treatments for Fergus whose symptoms include neurological damage and chest pains.
“When your child is jerking with involuntary movements all day, it’s really scary. And when no one can help you, that makes it even worse,” she said.
When Fergus got sick in 2022, Robertson stayed home to care for him. The following year, she got long COVID as well, and her husband later lost his job when his boss said he was spending too much time caring for his wife and son.
Long COVID has so far cost the Robertsons nearly £100,000, including £71,600 in lost wages and £20,300 in medical expenses.
The family no long takes holidays, or buys new clothes, and has gone into debt paying for private consultations.
“We’ve had some dark days,” Robertson said. “But I will never stop trying to get him better, no matter what it takes.”
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