A 12-year-old girl whose weight has plummeted below six stone and who needs a feeding tube more than two years into her Long Covid battle says she's desperate for her old life back.
Tillie Adams is facing her third year of battling serious illness and doesn't know if she'll ever be able to do the things she loves again.
The schoolgirl goes into 2023 having endured a torrid year, and medics have no idea how much longer her ordeal will go on for - or if she will ever fully recover.
Brave Tillie, who is one of an estimated 87,000 children battling the long term effects of Covid, told The Mirror that her illness is robbing her of a normal childhood, leaving her angry and frustrated.
She said: "I want to be more like my normal self. I want to take out my tube, I want to be back to normal by next year.
"It's hard for me because I'm trying to learn I can't do everything I used to do. I didn't think it was going to last this long, I thought it would just be a couple of months.
"Sometimes I think I'm getting better, but then I get ill and it takes me back."
Tillie, from Hoxton, east London, tested positive for coronavirus in December 2020, and her condition deteriorated rapidly in the following weeks.
She spent two weeks in hospital after losing a stone as medics desperately tried to work out what was wrong.
She was eventually told she had Post Covid Infection Syndrome, and has had a NG tube, which provides vital nutrients, since last summer.
Although she can eat small meals, this causes her chronic pain.
Her mum Kelly, 44, said her daughter is a "different child" to the energetic sporty youngster she was before her illness.
"She was only supposed to have the tube for six weeks initially," Kelly said. "I just think 'are we going to go back to the way we were before?' That's always on my mind.
"I always ask the doctors, but all they can say is 'we hope so'. We still don't know how long it's going to be until she gets better.
"Each time we go to the hospital or the post-Covid clinic, they still don't have any answers. They're learning as well."
Kelly said she's not aware of any children with symptoms similar to Tillie's who has yet made a full recovery.
Tillie suffers severe stomach pains when she eats, and regularly endures sickness and bad headaches, and finds it hard to sleep.
She does reduced hours three days a week at her school, having previously tried returning five days a week. On Tuesdays and Thursdays she has home schooling in maths, English and science.
"I see my friends a lot, but I want to be in doing what they're doing, but it's too much for me," Tillie said.
In the summer Tillie started rollerskating for the first time since she got ill, but heartbreakingly was forced to stop because she was in too much pain.
"I stopped because it started hurting," she said.
Kelly said: "If she felt good that day she'd got out and try and do as much as she could, but then she'd suffer for a couple of days.
"It's very hard for her to realise that even if she's having a good day, there's no point in doing a lot and then suffering tomorrow. It's taken her a while to realise she needs a healthy balance.
"If you speak to people they're shocked that she's got this because of Covid. It's all because of Covid, she was perfectly fine before all this."
Kelly said she hopes Tillie can increase her hours at school by Easter, but this depends on her putting on weight.
"At the moment even though her weight is stable she's not gaining enough weight. It's obviously affecting her bones, her BMI is really low."
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 more than 17,000 followers, and the family have been inundated with messages of goodwill.
Among those getting in touch are other children going through a similar ordeal.
"I try and help them as much as I can because I know what they're going through. I realise I'm not alone.
"I want to raise awareness, I want people to know it doesn't just affect adults."
It is estimated that around two million people in the UK are suffering from Long Covid. This includes around 87,000 children - 30,000 of who have had the condition for at least a year.
