Father vows to continue caring for daughter with ‘locked-in syndrome’

Pat O'Leary plants a kiss on the foreead of his daughter Catherine.

A father has vowed to continue caring for his ‘locked-in syndrome’ daughter at home despite her €2.5m court-awarded care fund running out.

Pat O’Leary, whose paralysed daughter, Catherine, has battled bravely to survive almost a decade with the crippling condition, also called for a review of court awards in medical cases where the injured person survives longer than was predicted during the legal process.

“Over my dead body is Catherine going back to a nursing home,” Pat said last night.

“When Catherine first got sick, we didn’t think she would survive for more than a few years.

“But now we look at her, and thanks to the fantastic care she’s getting at home, we think she could survive another five or 10 years.”

His family has now launched a GoFundMe campaign to help raise money to continue caring for Catherine at home. Her care bill is estimated at around €38,500 a month.

The family’s fundraising drive comes following confirmation from the wards of court, who oversee Catherine’s 2013 court award, that there is enough money left in the fund to cover about seven months of full-time intensive care for her.

“It is a total and absolute worry for us,” Pat said.

“We get no help whatsoever from the State, yet we save the State hundreds of thousands of euro in care costs every year by caring for Catherine at home.

“But we have been left with no other option but to launch a fundraising appeal.”

Catherine, 41, was left paralysed from the neck down and with severely impaired mental capacities, following surgery at Cork University Hospital for the removal of a brain tumour in January 2008.

Catherine O'Leary, Carrigaline, who suffers with Locked-In Syndrome with her father Pat, her nurse Ella Luca and her carer Eva Gaspar (right).
Catherine O'Leary, Carrigaline, who suffers with Locked-In Syndrome with her father Pat, her nurse Ella Luca and her carer Eva Gaspar (right).

She can only communicate by blinking.

She spent six years in hospital and residential care until finally, she was discharged in 2014 to her parents’ Pat and Margaret’s home in Carrigaline, which has been specially adapted to suit her complex medical needs.

Catherine sued the HSE, through her father, for alleged negligence, and in November 2013, the High Court approved an award of €2.5m for her ongoing care costs.

The HSE denied the claims and the award was made without admission of liability.

The award was based on a life expectancy of 10 years, from the date of Catherine’s surgery in 2008, and she was made a ward of court.

Since Catherine moved into her parents’ home, a team of 10 highly trained nurses has been working round-the-clock to care for her.

Pat said the €38,500 monthly bill — or €460,000 a year — includes staff costs, medication, monitoring, and medical equipment, and they have tried to secure savings where possible.

“In the first year, it cost just over €550,000, and we have managed to get that down,” he said.

“But people who are not in this kind of situation don’t realise the costs involved. Even the insurance costs about €5,000 a year.

“The care Catherine gets is absolutely fantastic. Her team are brilliant. They are all highly trained and they have helped us to maintain her dignity.

“Our only aim is to give Catherine the best quality of life possible, and to keep her comfortable.”

As the court-awarded funds run out, Pat said his family is exploring several other options and legal avenues, as well as the fundraising, to ensure they can continue caring for Catherine at home.


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