‘I was one of the first children to get long Covid and I’m still not better’

While the lockdowns and distance restrictions may no longer be a feature of daily life, the Covid-19 virus still is.

Some people were affected by the virus for a week or two, but for some patients, the symptoms never left.

It is estimated that around two million adults have long Covid in the UK, and around 60,000 children have the condition.

It is believed that Indiana, now 17, was one of the first children to get long Covid in the UK.

Alongside her mother, Jane, 45, she spoke about her experience of the virus.

Indiana said it all started soon after one ballet lesson. She said: “It started in March 2020 when I was first sick and I didn’t really know what it was, because it was when people didn’t really know anything about Covid back then.

“I had a normal cold, although I remember feeling really not very well. At the time I was preparing for my ballet exams.

“I remember going into the mock exam feeling really, really unwell. I pushed through it but it was I was coughing the whole time, which wasn’t very pleasant, and I remember just feeling so unwell that day.

“From then on it just started to get worse and I never really got better.”

Indiana had lots of tests and consultations in the weeks after she fell ill, but it wasn’t until 2021 that she got a long Covid diagnosis.

She said that while her symptoms have died down, the fatigue persists and long Covid continues to impact her education.

She added: “I can only be in school for a very, very limited amount of time. And there are so many conditions that have to be put in place in order for me to be able to function semi-normally. 

“It’s obviously difficult because it’s been three years, but it’s still so new. It just is really difficult because felt like such a battle for me to be able to achieve the same thing a fully able-bodied person would be able to and I do sometimes feel a little bit frustrated.

Indiana is supported by her mother, Jane, who has fought for her daughter. She described what life was like for Indiana just before she was struck down by long Covid.

She said: “Indi was dancing 16 hours a week pre covid, academically and musically gifted, boundless energy… school 8am-4:30 at a highly academic school. Dancing 6pm to 9pm, 4 days a week, and 12pm to 4pm on Saturday.

“She contracted Covid in late-February 2020. In three-and-a-half years of her wrestling through this disease, the only way I have seen improvement is by following a combined approach.

“Indi was getting chest palpitations, extremely low blood pressure (dangerously low) and irregular heartbeat and was still incredibly fatigued, despite some improvement, her heart rate would also spike into the 180s for no reason.”

Jane added that some medications and treatments had helped: “The aspirin and electrolytes have helped stabilise this a little, although her heart rate does still spike when she walks.”

“I do feel the NHS could do more in researching these solutions and their positive impact.

“Despite the CFS clinic being kind and responsive… the answers to moving into recovery stop there. There have been no investigations beyond basic blood tests and heart scans.”

Jane added that the help from the charity Long Covid Kids had been “lifesaving”.