Long-term effects of coronavirus have left a nine-year-old Aberdeenshire girl unable to walk unaided, despite first contracting the virus more than two years ago.
Anna Goss developed a mild case of Covid-19 in March 2020 and has since been unable to attend school properly.
Her mother Helen Goss told BBC Radio’s Good Morning Scotland the family have become “prisoners” in their own home after long Covid left them unable to complete everyday tasks.
More than 150,000 people in Scotland are estimated to have the post-viral condition and the Scottish Government has announced a £3m support package.
Anna developed paediatric inflammatory multisystem syndrome (Pims) after her coronavirus diagnosis and became “terrifyingly unwell”.
Ms Goss, from Westhill, said: “Her temperature was 40 degrees, there were times when I couldn’t wake her up. She wasn’t eating or drinking. Even the tiniest bit of light was actually painful to her eyes and she had a rash all over.
“It was scary. I didn’t sleep for about three days because I wasn’t sure if I’d wake up and she’d still be there. But she’s not really recovered since.”
Anna said she was operating on “5%” energy every day and struggled to return to school after lockdown.
She developed a “terrifying” condition known as paediatric acute-onset neuropsychiatric syndrome (Pans) where inflammatory processes cause psychiatric symptoms.
Treatment is not available through the NHS, and the family had to fund private care which treated the condition with “simple” antibiotics and anti-inflammatories.
Little support is available to long Covid sufferers as the post-virus symptoms do not regularly appear on routine tests.
Ms Goss said: “She’s had multiple lab tests and everything comes back as normal, as it tends to do with long Covid in adults – and it’s the same with children.
“It does suggest that we’re not looking in the right places, these tests are maybe not the correct tests to be doing, so I would like to see deeper tests, but at the moment they’re not available in the UK.”
Anna tested positive for Covid-19 a second time – in July 2021 – which resulted in new symptoms, including pains in her hands and legs and muscle and joint weakness.
The pain and fatigue means Anna is unable to walk more than a short distance without support and she now uses a wheelchair.
Ms Goss has asked her local authority to provide one-to-one tutoring for her daughter since she is unable to attend school, but the council said it did not have resources to do so.
She said: “It has absolutely upturned our entire world, we are really prisoners in our own home.
“I’m so grateful that we found the Long Covid Kids charity because, honestly, without that peer support I would be absolutely lost.”
Ms Goss, who also has long Covid symptoms, has called for more support for people impacted by the “devastating” condition.
She said: “We need to do some data gathering and find out the prevalence. We need to make sure there is support in place for these children who are suffering at home in silence.
“No one sees them, and we need a wider awareness that long Covid in children is real and it can be devastating, and nobody seems to be listening or really care that much.”
Kevin Deans, a consultant chemical pathologist at NHS Grampian, said Anna’s case “brings home just what a devastating condition long Covid is” and called on faster action to treat the illness.
The Scottish Government has said it is “determined” to improve care for long Covid sufferers and have pledged £3m this year.
A spokesperson said: “An example of this can been seen in NHS Greater Glasgow and Clyde where resource has been allocated to support the recruitment of an additional paediatric occupational therapist to provide support to children, young people and their families.”