Watch Stacey Poole's second report in our series looking at the children living with Long Covid.
A 14-year-old boy from Dover in Kent left bedridden from Long Covid, has told ITV Meridian doctors told him to 'stop making it up.'
Hayden Stokes first got Covid on Christmas Eve 2020, and recovered after a couple of weeks - but he slowly deteriorated.
From then on his condition worsened until he was barely able to leave his bedroom.
"The last six weeks have been really tough. Now on a really really good day, I could do maybe an hour of school at the most.
"But I've had a bit of a crash recently.
"I might move from my bed to my chair in my room, and that would be my whole day. Then I'm so exhausted I just have to get back into bed.
"I'd usually wake up at 8 or 9, get into my chair and then stay in my chair until 11 or 12, then get back into bed."
Hayden describes the impact the effects of Long Covid have on his daily routine.
"Long Covid needs to be recognised more as a physical illness.
"When I was in hospital, doctors either couldn't diagnose it as Long Covid.
"Or they were saying it was all in my head and to stop making it up."
Hayden developed mild symptoms initially, including headaches and loss of smell.
But not long after, he started experiencing dizziness. Hayden's mum Katherine Flanagan says she put it down to puberty.
"Every time he'd stand up he'd get really really dizzy.
"I thought, 'you're just over 13, you're not drinking enough, you're growing, so that's what it is.'
"But I was wrong, as he kept getting dizzy over and over and things just escalated.
"Then the dizziness peaked and he stopped being able to hold his head up and had to keep lying down."
Katherine Flanagan, Hayden's mum
Hayden stopped being able to understand a simple conversation according to his mum, and the once avid reader was unable to concentrate on his favourite books.
But then physical symptoms followed - he wasn't able to regulate his body temperature, and couldn't move his legs properly.
"It was truly terrifying," Katherine added.
"Especially when you go to the hospital and they say 'we don't know, we don't know.'
"He was finally diagnosed with Long Covid, and the Long Covid clinic believe he's got PoTS (Postural Orthostatic Tachycardia Syndrome).
"His life has shrunk dramatically."
The NHS has offered Hayden no treatment.
He isn't able to attend school - and his only hope of getting better is taking part in research trials of experimental drugs.
"I'm hoping to participate in more trials and do everything in my power to get back to how I usually am," Hayden added.
"I have to be cautious with hope."
The NHS has committed £90m for long COVID services during the 2022/23 financial year.
An NHS spokesperson said: “The NHS has invested £90 million over the last year and will invest an additional £90 million next year to support people affected by Long Covid, including specialist hubs for children and young people.
"Local teams are continuing to work hard to minimise any delays to assessment and treatment.
“Parents who are concerned about their child’s long-lasting symptoms following Covid should contact their GP for further advice and support.”
What are the symptoms of Long Covid?
The most common symptoms of are extreme tiredness (fatigue), feeling short of breath, loss of smell and muscle aches.
But there are lots of symptoms including problems with memory and concentration widely known as 'brain fog.'
Other symptoms include chest pain or tightness, difficulty sleeping, heart palpitations, dizziness, pins and needles, joint pain, depression and anxiety, tinnitus, earaches, feeling sick, diarrhoea, stomach aches, loss of appetite, a high temperature, cough, headaches, sore throat, changes to sense of smell or taste and rashes.
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