Video report by Health Correspondent Helen Ford
A mother from Northumberland is calling for more research and greater understanding of the long-term symptoms of COVID-19 in children.
Nichola Careless says her son and daughter have had months of painful symptoms, after catching the virus last year.
Until a few months ago, Mani Careless loved nothing more than playing sport.
But he and his family say since catching COVID in the autumn, he's been left with a range of debilitating symptoms that have changed every aspect of life.
Mani said: "It's been really hard because I used to be able to do so many things - now I'm just kind of strapped to the couch. When I try to walk, it feels like someone is just pulling me down and I'm shackled to the floor and when I move, even a little bit, it hurts."
For Mani's mother, the focus is on looking after her son - as well as her daughter - who has experienced similar symptoms.
Nothing that we're going through now is anything like our real normal life, you know, every day is just about caring for poorly children. You don't know what each day is going to entail. It's a real rollercoaster.
They're feelings shared by other parents, including Frances Simpson from Scarborough, who's co-founded a national childhood COVID support group.
"The majority have been sent away, been told that their child has anxiety, that they have anxiety, that the child is mimicking their symptoms. There needs to be some sort of pathway in place for the NHS - for GPs to be able to refer to someone who can provide some sort of help and some support."
The Government says the NHS and other bodies are coming together to learn more about the issue of long COVID in children, for example, collecting data to understand its prevalence and developing a model of care.
In a statement, the Department of Health and Social Care told us:
“We are continuing to work with our outstanding scientists to improve our collective understanding of the impact long-Covid has on people of all ages – making sure we deliver the best and most bespoke support possible to affected individuals.
“To help children suffering with long-Covid, we have opened new specialist NHS clinics across the country which provide assessment for children, young people and adults alike. These clinics mean medical experts are able to assess, diagnose and treat people suffering the debilitating long-term health implications of this virus.”
For the past five months, everything has been on hold for Nichola Careless and her family.
Her main priority is finding answers - and understanding - in the hope of regaining her children's health and their previous lives.