Woman wakes up unable to talk and only one other person has her rare condition

A woman fell seriously ill overnight and woke up the next morning in a terrifying state of not being able to speak.

Claire Edwards, 47, is now completely non-verbal and unable to walk or take care of herself after being diagnosed with an extremely rare condition.

She is one of only two people in the UK living with AARS2 leukodystrophy, a genetic disorder and progressive disease that damages the brain and nervous system.

Her husband Paul Edwards, 44, said the devastating illness took its toll overnight with Claire going to bed as normal and waking up not knowing who she was.

“It happened overnight,” he told Birmingham Live.

“At five o’clock in the evening, everything was fully functional but when I woke up at two o’clock of that morning, Claire wasn’t in bed. She was basically AWOL, I looked everywhere.

“What didn’t help was we lived in like a block of flats that was three storeys. [Claire] didn’t know who she was, what her name was, she was freezing cold.”

A panicked Paul, from Solihull, West Midlands, began researching what could be wrong with Claire as they awaited answers from medical specialists.

He said: “It’s not a psychiatric problem. I said ‘what are we looking at?’ [The doctor] said in the psychiatry world, she’d get a basic 20 memory question and she failed it all.

“But he said what was more disturbing is she was sitting by a window, on a glorious sunny day….they asked Claire about the weather and she said it was pouring down with rain so they knew then if it was psychiatric she wouldn’t have said that.”

Claire’s symptoms include memory loss, damage to nerve cells in the brain’s cerebellum which is responsible for balance, and loss of social inhibitions.

Eventually, patients becomes unable to walk, talk or care for themselves and there is no cure or treatment for the condition.

Claire is currently suffering the progressed stages of the disease, being no longer walk or talk and requiring around the clock care.

Paul said: “We’ll have one hour of carers in the morning which is for personal care, and then it’s the same on the evening.

“Basically, if you imagine what you and I can do on a daily basis, Claire’s had that all taken away so you imagine I’m doing double the amount of work for myself as well as Claire.”

The couple are due to celebrate their 20th anniversary this year, with Paul sharing a photo of the couple on the day they said “I do.”

He told how he is devoted to making sure his wife is loved and cared for, but opened up about the difficulties of their ordeal.

“Overnight the speech went, it just went all of a sudden. You won’t get a conversation out of Claire, which is quite lonely for me,” he said.

“You do it because you love them. Even if it means I didn’t sleep the whole week, I’d still be there to do it for her so that is my daily routine with Claire.”

Paul said he and Claire are in a battle to try and get funding and support for her condition.

He is also campaigning to improve research into the AARS2 leukodystrophy gene and has set up a Crowdfunder page with a £5,000 target.

Paul said: “In the long haul, we are looking for government funding but from the emails we’ve read, chances are we are not going to get it.

“We need to raise as much awareness as possible but at the end of the day, I also need support [from] the community.”

Paul has said that all donations raised will be placed into projects researching the AARS2 Gene which in turn will have to show on a yearly basis how it has been used.