Report by Granda Reports journalist Lise McNally
One year ago, Izzy Bolton was riding high. A 15-year-old athlete, runner and rider.
Now, there are days when she can barely walk.
She says: "In August I got really ill. I had pain everywhere. It was all up my legs. I had stabbing pains.
"If I used my arms, they'd burn. I would stammer and stutter, I couldn't get my words out properly. I couldn't walk because any time I put pressure on my feet the pain would shoot up."
One night it was really bad, I was shaking in pain. It was stabbing everywhere. I just didn't want to be there.
It did not stop. Izzy has Long Covid. She joins a growing community of children who caught coronavirus and never recovered. But just how common is this worrying phenomenon?
Official data from the ONS found one in seven secondary school age children were still struggling with symptoms five weeks after being diagnosed with coronavirus, and one in eight in children under 12.
Secondary school pupils with ongoing symptoms after 5 weeks
Under 12s showing symptoms after 5 weeks
But campaigners say that official figures go nowhere near uncovering the extent of the issue as they only look at those who tested positive.
Children were not a priority for testing as the pandemic unfolded - but if children are not tested - they are not counted.
Sammie McFarland and her daughter have both had Long Covid.
She now runs a support group, Long Covid Kids, helping more than a thousand families, and says problems getting a diagnosis make it harder to access care.
Sammie added: "They feel alone, unsupported, some families have lost their jobs because they've had to be at home caring for very sick children, we've got families who have had to access food banks for the very first time having lost their job, its really very difficult because theres no end point in sight, we don't know if these children are going to get better".
We have 1800 children in the group and we're growing at around 100 a week. The children we see are very very sick, many have been sick since March/ April. Not one of those chldren has yet recovered, and that really should be ringing some alarm bells, we need to be more curious about Long Covid.
Izzy Bolton's mum says she was forced to get a private diagnosis for her daughter after facing barriers in the NHS.
She said: "We were told 'wait until she's 16 because there's more resources for her as an adult.
"Well, what about today? She's suffering today, and every day she's going down hill. I was like 'I need some intervention, I need somebody to help'.
"I had to pay private to get her diagnosis. After all this banging your head against a brick wall and nobody listening, suddenly we had a lady who did all these different tests, chest X-rays, you name it...But I had to pay for that, and that isn't right either.
"It's horrendous because you feel so helpless. As a parent, you want to be the one that suffers with it."Izzy is under the care of a pediatric neurologist and is slowly building up her strength. She even has days where she can get back in the saddle.
NHS England say that since December - Long Covid clinics have been referring young people to specialist children's services - and that Izzy's case came before those centres were set up.
But campaigners say better awareness is needed, so the need for child-focused services can be properly evidenced and no young people are left behind.