A WOMAN WHO was diagnosed with a rare syndrome in 2008 which rendered her aware and awake but unable to move or communicate has died.

Catherine O’Leary of Carrigaline, Cork was 32-years-old when she developed locked-in syndrome after she suffered a stroke during surgery to remove a brain tumour.

Catherine (49) was surrounded by her family members when she died at 7am today. (Mon) Her brother Shane managed to fly in from New York last night. She is survived by her parents Pat and Margaret, her adult son Brandon and her four siblings.

In a post on the Catherine O’Leary Facebook page her family confirmed that the mother of one had passed away this morning.

“It is with great sadness that our beloved Catherine passed away peacefully this morning, surrounded by family. She will be deeply missed by all who knew and loved her.”

When Catherine was first diagnosed she spent time in a high dependency bed at Cork University Hospital (CUH) before being flown to a rehabilitative facility in Putney in the UK for treatment.

She initially responded well to the rehabilitation treatment at the Royal Hospital for Disabilities in Putney. However, in October 2008 she stopped breathing and lapsed into a deep coma.

Doctors told her family there was little or no hope for her. However, she regained consciousness and was subsequently flown back to CUH.

Catherine was a patient at CUH for a further four years. She spent a year and a half as a full-time resident in Farranlee House Community Nursing Unit in Cork before being brought home to Carrigaline in September 2014.

Catherine required 24-hour care, could only communicate by blinking and was fed through a tube.

In 2013 her father Pat and his family took the HSE to court on Catherine’s behalf, claiming a late brain tumour diagnosis in CUH was the reason for her condition. The HSE denied these claims.

The O’Leary family was awarded a settlement of €2.5m following the High Court battle with the HSE. Catherine was a former manager of a branch of Subway in Ballincollig, Co Cork.

Pat O’Leary previously told the Irish Examiner that the decline in Catherine all started with a case of hiccoughs in 2005.

Catherine couldn’t shake them off. They were persistent to the point of annoyance, and so she was referred to a clinic in CUH.

Mr O’Leary said that “they kept putting it down to reflux in her stomach”. By Nov 2007, by which time Catherine had lost weight and been suffering serious headaches, she had had enough, returning to the clinic and demanding a brain scan.

Mr O’Leary told the Examiner in 2013 that the scan found a non-cancerous tumour on her brain stem.

“We knew at the start, from what the neurologist said, it was going to be a difficult operation… Where the actual tumour was, it was on the brain stem. It was affecting all her organs, her eating, her movements — she would have been dead in three weeks otherwise.”

Mr O’Leary and his wife Margaret campaigned tirelessly on behalf of their daughter. The family created a GoFundMe page in 2021 to help pay for a new vital signs monitor for Catherine. The old one needed to be replaced as the model had become obsolete and was beginning to damage her fingers.

The doctors’ grim prognosis that Catherine would not live beyond ten years later formed the basis of a damages settlement.

But the award — which effectively predicted Catherine would die before 2017 — didn’t take into account her battling spirit which saw her exceed medical expectations.

In 2018 Mr O’Leary told Primetime on RTE that people often asked him if they were able to communicate in any way with Catherine.

“People say ‘does she understand you? We are there. We are talking to her as if she understands everything. But I mean there is a certain amount of interaction. When she wakes up she looks at the ceiling and sees all her lovely photographs of her son and herself and you would see her smiling and her eyes travelling around the ceiling looking.”

He described his daughter as a “fighter” and cared for her until the end. Funeral arrangements will be finalised in the coming days for Ms O’Leary.

Mr O’Leary told the Neil Prendeville Show on Cork’s Red FM this morning that he and his wife Margaret always vowed that Catherine would not have to live her life in pain.

“I was lucky that the palliative care came up to me and put a line in for me when she was so ill and they were telling me how to use the morphine. And I knew the moment she was going to be in a lot of stress and I administered the morphine. And it was like she said ‘thank you.’ And she just died in her arms.”

Mr O’Leary said that his heart was broken for Catherine’s son Brandon who lives in Sydney in Australia. Brandon not only lost his mother today but his father passed away in December of last year.

Mr O’Leary said that before Catherine went in for her operation years ago she told him that if anything happened to her that she wanted a private funeral.

“She said ‘take me from here get me ready and take me from the funeral home straight to the crematorium. I don’t want nobody standing over me. I don’t want no coffin opened. And I promised her that. I am delighted she did say that because at least I can carry out her wishes.

She is going to the undertakers this afternoon and they are getting her ready and then to the crematorium at 5pm on Wednesday.”

He said that his daughter Jackie hopped in to bed next to Catherine this morning and stayed with her for an hour.

Mr O’Leary said that initially they hoped that she would recover from the syndrome.

“When she was in London they were telling me that it was a possibility. But then she had a lot of brain damage. The battles we went through were unreal. But I am not bitter. I thanked the HSE online now. They have been good to us. I have to thank them for that.”

He thanked Catherine’s carers, some of whom are from Brazil, for their fantastic care of his daughter. He also expressed appreciation for the support of the public.