Cork woman Catherine O’Leary dies after living with locked-in syndrome for 15 years
Catherine O’Leary and her father Pat from a Go Fund me page.
A woman diagnosed with a rare syndrome in 2008 that left her aware and awake but unable to move or communicate has died.
Catherine O’Leary of Carrigaline, Cork, was 32 years old when a stroke during surgery to remove a brain tumour caused locked-in syndrome.
Her family confirmed on the Catherine O’Leary Facebook page that the mother of one passed away peacefully 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 unit at Cork University Hospital (CUH) before flying to a rehabilitative facility in Putney, UK, for treatment.
She initially responded well to rehabilitation at the Royal Hospital for Disabilities in Putney. However, in October 2008, she stopped breathing and fell into a deep coma.
Doctors told her family there was little or no hope. However, she regained consciousness and was subsequently flown back to CUH.
Catherine remained a patient at CUH for another four years. She spent a year and a half as a full-time resident in Farranlee House Community Nursing Unit in Cork before returning home to Carrigaline in September 2014.
Catherine required 24-hour care, communicated only 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 at CUH caused her condition. The HSE denied these claims.
The O’Leary family received a settlement of €2.5m following the High Court battle with the HSE.
Pat O’Leary previously told the that Catherine’s decline began with persistent hiccups in 2005.
She couldn’t shake them off. They became so persistent she was referred to a clinic at CUH.
Mr O’Leary said, “they kept putting it down to reflux in her stomach.” By November 2007, after losing weight and suffering serious headaches, Catherine demanded a brain scan.
Mr O’Leary told the 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 for their daughter. The family created a page in 2021 to raise funds for a new vital signs monitor to replace an obsolete model that was damaging her fingers.
Doctors’ grim prognosis that Catherine would not live beyond 10 years formed the basis of the damages settlement.
But that award — which effectively predicted Catherine would die before 2017 — didn’t account for her battling spirit, which saw her exceed all medical expectations.
In 2018, Mr O’Leary told on that people often asked if they could communicate 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.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
