ITV News' Chloe Keedy heard from two children learning to live with long Covid
"Some days you can cope with it, some days you can’t."
12-year-old Tillie Adams has been living with the effects of Covid for two years.
Diagnosed in January 2021, her "cold-like symptoms" quickly turned into something more serious.
"Mainly it was the stomach pains," her mum Kelly explains. "She was getting really bad stomach pains and when she would eat they’d get worse, and she’d be crying out in pain. So she stopped eating altogether."
By the time Tillie was admitted to hospital in April 2021, she weighed just three stone.
Ever since then, Tillie has had to be fed through a tube. Her symptoms are still hugely debilitating, making her feel sick and causing severe pain in her stomach and legs.
She is now back at school part-time, but struggles to do any of the other things she used to enjoy.
Tillie is one of 71,000 children in the UK suffering from post Covid-19 syndrome, better known as long Covid.
"You’ve got to think not just about that day," says Tillie. "You've got to think about the next day.
"Because if you've got something important the next day, you can't do anything that day. I try to think of all the positives. I try to think: 'I'm going to get better, I'm going to get better'.
"But, actually, I don't really know."
Kelly says the doctors are "hopeful" that her daughter will make a recovery, "but there’s no guarantee".
At Guy's and St Thomas' Hospital in London they've developed a dedicated clinic for children with long Covid.
14-year-old Imani Howsam is one of around 50 patients they've seen since it was established in October 2021.
It's designed as a 'one stop shop' where each child is assessed by a team of seven specialists, including psychologists, physiotherapists and dieticians.
Rob Schneider is an occupational therapist at the clinic. He tells me that long Covid causes a huge range of chronic symptoms in the children he treats, but that the kind of symptoms Imani has - "the fatigue, the brain fog, the difficulties with transitioning back to school" are fairly common.
Imani’s dad Karl says his daughter used to love playing squash and swimming, "but she can’t do those things anymore".
Her mum Nadia tells me that Imani is so exhausted, she sometimes sleeps for 18 hours a day.
The day we meet at the clinic marks only the second time Imani has left the house in a month, and she hasn’t been able to go to school for a year.
"I really miss school", she tells me. "I miss my friends. I just want my normal life back."
The clinic at Guy’s and St Thomas’ is one of 14 ‘hubs’ across England dedicated to treating children with long Covid.
The specialists can’t promise to cure the condition, but they aim to try and help children live with it.
"The hope is that with the right intervention, you turn it around more quickly, and we see some of the young people in our clinic get better within a few months," explains Dr Emma Parish, a paediatric consultant who helped to set up the service.
"But on the whole it takes a number of months and it's about a slowly improving picture. I think the impact socially for them is huge, and the impact for us as a society - because these are young people that need to get better so they can do what we want them to do and they want to do in the future."
Imani’s trip from her home in Surrey to her hospital appointment in London will take her days, if not weeks to recover from.
But when we chat after her appointment, she is beaming.
Both her and her parents tell me that it’s the first time since she became ill they feel as though they’ve been taken seriously, been listened to - the first time they’ve been heard.
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