‘My children said their goodbyes’: Rare auto-immune disease left mum unable to remember her family

Gemma Jolly, 45, was so poorly she forgot who she and her children were and spent months in and out of intensive care

Gemma has had three life-saving liver transplants (Collect/PA Real Life) (PA)

A mum who was so unwell she forgot who her family were and her children “said their goodbyes” as her liver was being “eaten away” due to an auto-immune disease is now back to work and planning a holiday after the remarkable success of a third life-saving liver transplant.

Gemma Jolly, 45, a vocational learning tutor at St Andrew’s Healthcare, was so poorly that she forgot who she and her children were and spent months in and out of intensive care due to the effects of auto-immune hepatitis.

The mum-of-two underwent two failed liver transplants before having a third op in March 2021 which has been a success.

Now Gemma is back at work and is planning her first family holiday in years to celebrate her recovery.

Gemma, who lives in Northampton with her husband, Mike, 48, a transport manager, and their two children, George, 22, and Harrison, 17, told PA Real Life: “It was an incredibly difficult thing for my children to deal with, watching their mum go through not one but three liver transplants.

“I was in and out of intensive care and at one point they were even advised to say their goodbyes.

“I’m enjoying being back at work and having things go back to normal now, I just hope my health can continue as this is the longest I’ve been stable after a transplant.”

After first being diagnosed with auto-immune hepatitis in 1997, a rare cause of long-term hepatitis where the immune system attacks and damages the liver, Gemma said it was not until after she’d had her children, in 2001 and 2006, that her health started to take a turn for the worse.

She said: “It started off as manageable, I’d struggle with tiredness and jaundice, things would improve with each pregnancy but after having my second son, my health went totally off the scale.”

Regularly picking up infections, Gemma began to suffer severely with illness, fluid on her lungs and sepsis.

As her health deteriorated, the mum-of-two would forget who she and her family were.

Admitted into intensive care at Kettering General hospital in 2015, Gemma’s husband and children were advised to say their goodbyes.

Gemma said: “My husband got a call at about three o’clock in the morning saying that I had to have an emergency procedure and that he and the children should come and see me in case I don’t pull through, which was an incredibly difficult thing for them to go through.”

Gemma pulled through and, once stable, she was informed that she would need a liver transplant.

She said: “I had something called an encephalopathy which is when the liver can’t cope with the toxins.

“I would go through bouts where, within a matter of 10 minutes, I wouldn’t know who or where I was, and I wouldn’t know my own children.

“The two of them did find it quite difficult and so did my husband, my husband just sort of carried on for the children more than anything.”

In 2016, Gemma had her first liver transplant which, at first, seemed to cure her of her symptoms.

She said: “I was back to normal, going back to work, it was amazing but after six months it just all started to go wrong again.

“I started with jaundice, which the kids would call me a minion.”

Gemma also began to struggle with fatigue, and it became clear that her transplant was failing.

Put back on the waiting list, Gemma had her second procedure in November 2019.

While she had a slower recovery period, the mum gradually started to feel like herself again.

For eight months, Gemma was able to regain her “normal life”.

She said: “I was still being monitored by the hospital but it was going well for a while, I went back to work and was working full-time. Then I got the phone call saying that all of my bloods had gone haywire all over again.”

Gemma was told she would need to go in to hospital to wait for an organ to become available and, as it was during the 2020 lockdown, she would not be able to leave without risking losing her spot on the transplant list.

In March 2021, the mum had her third liver transplant which was a success.

She said: “I’ve been really wary because things have gone wrong before but this is the longest I’ve been stable after a transplant so I’m hopeful that this will continue.

“It’s good to be able to plan for the future again, life goes on hold when you’re unwell.”

Now, Gemma is enjoying normality and family life, and has plans to go on her first family holiday in years.

Regaining her health, and loving life, Gemma has said that “every day is a gift”.

She said: “We’ve always had to holiday in the UK as I couldn’t be more than four hours away from the hospital while I was on the transplant waiting list, so we’re planning a big family holiday to Crete for next year.

“My family and my employer, the mental health charity, St Andrew’s Healthcare, have been so supportive of me through my journey.

“The main thing I’d want to get across is to speak to your family about your wishes to donate your organs, because ultimately it is down to your family’s wishes on whether your organs get donated to someone on the wait list.”