Brave MND campaigner loses her battle with the disease
A Crossdoney woman, who raised thousands of euro for the Cavan branch of the Motor Neurone Disease Association and awareness of the condition, has lost her battle with the disease.
Marilyn O'Connor (58) from Drumlaney passed away peacefully on Monday, September 9, at Cavan General Hospital in the loving care of her family and dedicated carers.
She hit the headlines earlier this year when she chained herself to the railings outside HSE offices in Monaghan in a dispute over access to carers.
Marilyn was diagnosed with Motor Neurone Disease almost three years ago. Her condition deteriorated rapidly over the past year.
MND is a rare condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting. Around one person in 30,000 develops MND each year. In Ireland, this amounts to around 150 new diagnoses every year.
She told the Celt in February of this year: "I need 24 hour care. I need everything done for me. I have no use of my hands, no use of my legs and, as you can hear, my speech is not very clear."
At the time Marilyn was determined to remain at home and not go into a nursing home. She claimed to have been left without a carer three nights a week despite having been allocated 108 hours of care from the HSE every week to help her continue to live at home.
To bridge the gap, Marilyn said she spent €7,500 of her own savings for her funeral to foot the bill.
Her dispute centred on reimbursement for private care when HSE carers fail to show due to leave or sickness. At the time, she accused HSE management of "bureaucracy and incompetence" in dealing with her care plan.
Marilyn said that every day she lived with the "stress" of the situation and couldn't operate on a "day to day basis" - that she needed certainty and security.
Contacted by the Celt in relation to Marilyn's case, the HSE said that it would not comment on individual cases in consideration of its duty of confidentiality.
"The HSE regrets any experiences by service users that they deem not to be meeting their expectations. The HSE will respond to any issues identified to it and work with individuals impacted to agree a resolution," said a spokesperson at the time.
Marilyn told the Celt she was grateful to have "wonderful friends and family" who supported her through her illness.
Over the past 30 years, Marilyn helped to raise in excess of €100,000 for various charities including for the Irish Motor Neurone Disease Association.
In February 2023, she hosted a Valentine's Day 'Dance While You Can Ball', which raised €16,000 for IMNDA and a cancer charity.
Marilyn was predeceased by her husband Vincent O’Connor who passed away 10 years ago.
She is survived by her children Billy (Emily), Michael (Karolina), Katie and Phoebe; her grandchildren Iollán and Cuan; relatives and her many neighbours and friends.
Marilyn is resting at her residence today (Wednesday) from 2-7pm. Family time thereafter please. Her removal will take place tomorrow (Thursday) from her residence to St Fethlimidh’s Cathedral, Kilmore, for funeral service at 2pm, followed by commital and burial in Kilmore Cathedral parish graveyard.
May she rest in peace.
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