Cork woman who had locked in syndrome since 2008 dies
Olivia Kelleher
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.
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 €2.5 million 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.
