‘This would give us peace of mind’: Fundraiser for Catherine, living with locked-in syndrome

Pat O’Leary, has been caring for Catherine in his home for eight years and has highlighted the need for a generator as one of the newest hurdles they face.
‘This would give us peace of mind’: Fundraiser for Catherine, living with locked-in syndrome

Pat O’Leary caring for his daughter Catherine, who has locked-in syndrome. Picture: Damian Coleman

The family of a Cork woman with locked-in syndrome are raising funds for a much-needed generator as power cuts and energy costs threaten her standard of living.

Catherine O’Leary was diagnosed with locked-in syndrome, following two strokes during an operation to remove a tumour from her brain. The condition has left her paralysed and unable to communicate.

Her father, Pat O’Leary, has been caring for Catherine in his home for eight years and has highlighted the need for a generator as one of the newest hurdles they face.

The Carrigaline man said: “We’re raising money for this generator because of all the power cuts. We have had a few now already and we’re worried that down the line there might be more and longer power cuts.”

“If that was to happen, we would be in trouble because the batteries in Catherine’s machines only last a certain length of time,” said Mr O’Leary.

Family friend Victoria Alexander set up a GoFundMe page to help raise the funds needed for the generator.

“We have a good bit of work to do to raise money for the generator, the electrical work and there’s servicing that has to be done on the generator as well to make sure it is kept up. So far, we are up to €2,000 and Victoria, who set up the GoFundMe, has donated €1,000 also so we are up to €3,000 now,” said Mr O’Leary.

Ms Alexander is also running a raffle in Galvin’s Carry Out Off Licence in Carrigaline in aid of the cause.

A generator would greatly benefit the family as the backup batteries in many of the machines last up to a maximum of two hours after a power cut.

“This generator would [give us] massive peace of mind because if the electricity goes off, all we have to do is start it up and we have electricity for the medical equipment in Catherine’s room.

“We badly need a generator — we have a suctioning machine, we have two monitors, there is an oxygen machine, an electric bed, and an overhead heist,” Mr O’Leary explained.

As prices for fuel and energy soar, Pat describes the mounting costs that face his family: “Our electric bill was €450 for two months and now that has gone up around €850. We have to have the heating on all the time for Catherine’s room because it has to be a certain temperature.”

Mr O’Leary claimed that he had applied for funding from the HSE for the generator which was denied. He also claimed that this is just one of many supports that have been refused.

“I look after Catherine 24 hours every day. Some time ago, we wrote to [the HSE] and asked for two or three nights with an extra carer to come in for a couple of hours so I can get a good night’s sleep and they said no,” he claimed.

Previous crowdfunding for Catherine saw an overwhelming response, with MMA fighter Conor McGregor even chipping in €5,000 in aid for a monitor.

“The generosity of the people of Cork and the surroundings is amazing. We hate begging but we are pensioners. We can’t afford this alone,” Mr O’Leary said.

In 2013, he 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.

“Thank God, Catherine is good. She came home from the nursing home almost eight years ago and she has been doing good ever since then thankfully. She is really amazing.”

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