THE mother of a young woman who died from a rare illness has spoken about how her family struggled to come to terms with her daughter’s diagnosis and why they are continuing to support a charity which gave them such invaluable support.

In 2013, Tirion Ray was diagnosed with mitochondrial disease, a little-known, incurable condition, which caused her to suffer daily seizures, liver failure, and to lose the ability to walk.

After a five-year battle with the condition, she died on April 9 this year, aged 22.

Speaking at the end of Mitochondrial Disease Awareness Week, her mother Helen, who lives in Tidenham, remembered the family’s shock when Tirion was diagnosed.

“We had never heard of it,” she said. “Nobody at the hospital knew what it was. All we knew was that it took lives.

“We were then referred to a specialist service in Newcastle, where the doctors told her she could have a normal life.

“But our lives had gone from having a child working full time and going out on weekends to needing medication three or four times a day.

“I’d never experienced somebody having a seizure, let alone my daughter.”

Mrs Ray described her daughter as “always sunny”.

“Even after she got ill and towards the end, she was still joking and messing around,” she said.

After the diagnosis, the family’s feelings of shock and confusion continued until they attended a family day organised by The Lily Foundation, set up by a mother whose baby died from mitochondrial disease in 2007.

There, Tirion and her family met others living with the illness, and heard talks on what the illness was, and treatment methods being explored.

“Tirion loved going, she got a lot out of it,” Mrs Ray said.

“Part of the foundation’s aim is that they don’t want other parents to be in a situation where they don’t know what to do.

“We will always have links with the Lily Foundation. We want to do as much as we possibly can to make more doctors aware they might have patients with mitochondrial disease.

“It’s not common, so it’s not something you’d immediately think about testing for.” The Lily Foundation is one of the charities being supported by radio presenter Jamie Theakston when he walks seven marathons in seven days for the Make Some Noise organisation.

He will walk from Cardiff to Caldicot on Friday (September 28) before leaving for Gloucestershire the following day, and Mrs Ray is planning to join him for part of the route.

Mrs Ray also thanked Tidenham parish after the village church was illuminated last week to commemorate Mitochondrial Disease Awareness Week.

For more information on The Lily Foundation, visit www.thelilyfoundation.org.uk and for more information on Jamie Theakston’s fundraiser, visit jamieslongwalk.heart.co.uk