A woman who was diagnosed in 2008 with a rare syndrome that rendered her aware and awake but unable to move has died aged 49.
Catherine O’Leary, of Carrigaline, Cork, was 32 when she developed locked-in syndrome after suffering a stroke during surgery to remove a brain tumour.
The mother-of-one’s family confirmed she had died on Monday 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,” they said in a post on the Catherine O’Leary Facebook page.
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When Ms O’Leary 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, England.
She initially responded well to treatment at the Royal Hospital for Disabilities. However, she stopped breathing and lapsed into a deep coma in October 2008. Doctors told her family there was little or no hope for her. However, she regained consciousness and was flown back to CUH.
Ms O’Leary was a patient at CUH for a further four years. She spent time in a nursing unit before being brought home in September 2014. She required 24-hour care, could only communicate by blinking and was fed through a tube.
The O’Leary family secured €2.5 million in settlement of a High Court against the HSE in 2013. They claimed Ms O’Leary’s condition was caused by a late diagnosis of a brain tumour. The HSE denied the allegations.
The case alleged Ms O’Leary was first referred to CUH in late 2005 with continuous hiccups that had persisted for three months. No cause for the hiccups was found through investigations in 2006 and 2007, over which period she continued to experience these, headaches and weight loss.
A scan in January 2008 identified a brain tumour and she underwent surgery that month, the case alleged.
Ms O’Leary’s parents, Pat and Margaret, campaigned tirelessly on her behalf. In 2018, Mr O’Leary told RTÉ’s Primetime 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,” he said.
“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 her death.
