Jane today

Aged just 13, Jane was hospitalised after a series of severe seizures – but as doctors didn’t know the cause of these, they couldn’t match her to the right medication to stop them.

Over the next eight weeks Jane was moved from her local hospital to Alder Hey, Liverpool’s specialist children’s hospital, where she had a muscle biopsy.

This led to her finally being diagnosed with Adult Onset Leigh Syndrome – a rare condition believed to affect around one in 100,000 people.

The symptoms can include seizures, memory loss, difficulty with speech, sudden muscle spasms and fatigue.

In Jane’s case, the condition caused encephalopathy, damage to the brain which was so severe she had to relearn to read and write.

Jane first heard of The Brain Charity in 2012 through a friend, and came along to the charity’s coffee mornings and confidence course.

The 31-year-old said: “That first coffee morning was such an eye opener in all the ways you could give help to people like me who had been abandoned by the other places.

“The Brain Charity was so welcoming, and it still is.

“After the confidence course I could go up to people and talk to them – it helped me so much.

“I have made a lot of friends, more than I thought I would. I have changed.

“Since becoming an adult, The Brain Charity has been the best support other than my family.”

Having seen the coffee morning grow over the years, Jane decided she wanted to give back and in 2016 started volunteering.

Jane has made the most of the digital activities The Brain Charity put online during the COVID-19 pandemic, attending the quiz, bingo and coffee mornings over Zoom with her parents and occasionally her Westie, Pickles.

Pre-lockdown, coffee mornings were attended by around 60 people but the new digital iteration has seen people sign in from as far afield as Cornwall, Newcastle and London.

Due to her Leigh Syndrome, Jane finds it hard to go outside, and said without The Brain Charity the last four months of lockdown would have been a struggle.

She said: “Without The Brain Charity, the last three or four months would have been a struggle.

“When we go out, we have to plan and go when there aren’t any crowds because that can cause a seizure and will wreck the outing.

“I rely on my dad, Al, to drive, so if he can’t get me there I can’t go.

“Zoom is easier for me, because when you’re face to face with a lot of people it can be overwhelming but when I’m sat in my dining room in my own surroundings, it’s just easier.

“Talking to people going through the same thing as me, I can hear how other people are doing and help them out as well.”