A brave schoolgirl who has to be fed through a tube has voiced her anger at the Long Covid nightmare robbing her of a normal childhood.
Tillie Adams, 11, is one of an estimated 117,000 under-16s suffering with the long-term effects of the virus in the UK - with 20,000 ill for more than a year.
During her 12 month ordeal Tillie has spent weeks in hospital and is often too ill to go to school.
Her weight plummeted dangerously as she struggled to eat after falling ill with coronavirus last January, and she still suffers from debilitating sickness a year later.
After her condition baffled medics for months, the schoolgirl was eventually told she had Post Covid Infection Syndrome, and has had a NG tube, which provides vital nutrients, since last summer.
Long Covid is thought to affect around one in 200 children under the age of 11, while 1.87 per cent of those aged 12 to 18 are believed to have it.
Tillie, who now struggles to walk up the stairs at her home in Hoxton, east London, and has fainted several times in recent months, said: "Sometimes I get so angry, I want to go to school, but it's just so hard, some days I can't because I'm just so tired and so washed out."
When she was first diagnosed with Covid she suffered with a temperature, aches and pains and lost her smell and taste.
Her mum Kelly was told that Tillie should start to feel better within a fortnight, but weeks later she was still suffering from headaches, stomach pains and difficulty eating.
Tillie, who used to be full of energy and enjoyed playing outside before she became ill, said: "I just felt confused, I was just so scared, I didn't know what to do.
"At first I'd just stay in bed because I was scared to move."
She spent two weeks in hospital after losing a stone in a matter of weeks as medics desperately tried to work out what was wrong.
"The more weight she was losing, the weaker she became," said Kelly, 44.
"She went grey and her lips split open, it was awful. It took a month before her energy levels picked up.
"She couldn't manage the stairs, she was sometimes falling up the stairs and when she got to the top she was so light headed she would almost faint.
"She still gets those effects now. She's like a totally different child."
At first Tillie was unable to dress herself, and she still needs help washing her hair.
Tillie, who is now helping researchers at University College Hospital in London understand Long Covid in children, was initially told she would only require an NG tube for two weeks.
But nine months later she is still using one as she makes a phased return to school, aiming to do a half day five days a week.
Brave Tillie missed out on much of her final year at primary school, but is desperate not to fall behind during her lengthy recovery.
"She wants to push herself and she wants to be at school," said Kelly.
"But they've told her she won't be able to go back to school full time until at least Year 8.
"Since October she's only managed three weeks where she's managed five half days. The rest of the time she's in bed, she's so washed out.
"She's really worried about falling behind, but she knows that this could go on for years."
Determined to show that Covid isn't just a virus that affects adults, and keen to show others going through a similar ordeal that they are not alone, Tillie last year set up an Instagram account documenting her journey.
It has amassed thousands of followers and the family have been inundated with messages of goodwill.
She said: "It's been amazing. I want to raise awareness for others so they know if they have it they're not alone."
The night before speaking to The Mirror, Tillie had spoken to another girl who was having an NG tube fitted.
Kelly said: "At first I was really nervous, but she said: 'I want to help people in the same position and show that kids are suffering too'.
"Children are often forgotten about, you don't see anything about kids with Long Covid, but when we were in hospital I spoke to lots of other parents who were going through the same thing."
Latest figures from the Office for National Statistics (ONS) estimates that 31,000 children with Long Covid had to limit their activity a little in December, while 12,000 were severely restricted.
It is believed that around 1.3 million people of all ages had Long Covid at the end of last year - just under two per cent of the population.
Sammie Mcfarland, founder of charity Long Covid Kids, said the organisation is supporting just under 6,000 families across the UK, with numbers rising steeply.
Last week alone more than 180 registered for support, she said.
"It's getting worse," Sammie told The Mirror, adding that she is aware of several children who require NG tubes after contracting Covid.
"There are a lot of children with issues like Tillie's.
"We urgently need GP training in recognising Long Covid and we need a strong awareness campaign that accepts children are experiening Covid harm.
"We're not seeing large numbers of people saying they're back to 100 per cent, many children aren't getting any better at all. That for me is the largest concern."
