'I would love if Yvonne died before me so I could not be full of fear of what is going to happen to her'
Midleton mum and Before We Die campaign member Mags Condon, 66, with her daughter Yvonne, who is believed to be Ireland's only known sufferer of a debilitating condition called Frazer syndrome. Picture: Neil Michael
There is a moment when tears well up in Mags Condon’s eyes.
It’s when she says she hopes her daughter dies before her.
“It’s not what any parent should ever say, or even think,” the 66-year-old mother-of-two says, her voice faltering as she wipes her eyes.
“But I don’t know what will happen to Yvonne if anything happens to me, or my husband Jimmy, and I am worried.
“I am worried what will happen to her when I die.”
As far as she has been told, Mags’ daughter is Ireland’s only known sufferer of a debilitating condition called Frazer syndrome.
The extremely rare genetic disorder has left her deaf, non-verbal, registered blind, autistic and she has the mental age of a five-year-old.
Since Yvonne was born, she has been fighting for basic services for her.
“I pay privately for her dental treatment and for her eyesight as she has a prosthetic eye and poor sight in the other eye,” she says.
While her daughter’s health and wellbeing is of primary concern to her, an issue that is being neglected is her own health.
She has osteoporosis and requires shoulder replacement surgery as well as neck surgery.
But her problem is the amount of time it would take her to recover from either operation, and she says she just can’t afford the time.
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"I'd need months to recover and with Yvonne, I wouldn’t have days, never mind months.
“I did have major surgery in December 2022. I had the surgery Friday, was home Saturday and was looking after Yvonne that very day.
“Recovery was supposed to be five months but I put one foot in front of the other and determination and no pity pot got me through.
“You just don’t get to feel sorry for yourself in a situation like ours. You just have to get on with things as best as you can.
“Taking time out for yourself is just hardly ever an option, and I am not alone — not by a long shot.”
Mags, who is a former care worker, retired in 2016, after she fractured her pelvis in three places in an accident.
Her role before she retired was as a child escort, helping take children with intellectual and other disabilities from her native Midleton to the Catholic mixed special primary schools St Paul’s and Scoil Bernadette in Cork city’s Montenotte.
Her husband Jimmy, who is also 66 and is a former utility operator who was contracted by Controlled Environmental Solutions to work at pharmaceutical giant Ely Lilly, is also retired.
The couple’s other daughter, Ciara, 42, is married with two children of her own.
Yvonne was born in 1986, three years after Jimmy and Mags married.
Mags recalls “everything was apparent” she was different from other children when she was born, as “her eyes and face were not the same” as other children.
It took the family another three years before they could get a confirmed diagnosis, and that was at London’s Great Ormond Street Hospital.
Up to the age of 18, she would be a regular visitor there.
In her first year alone, for example, Mags took her there 14 times, the cost of which used up all of the €14,000 in a fund that had been set up by friends and family to help with her care.
Flights alone cost the mother and daughter €288 each.
“I was only 26 years old when she had her first major operation at the age of three,” she recalls.
“Her head was like a large balloon after it and I just panicked, and ran out of the hospital screaming.
“I couldn’t deal with what she looked like immediately after the operation.
“She just went through so much herself then and in the years that followed.
“She was in what was at the time St Finbarr’s Children’s Hospital in Cork City for so long, over 18 months, that the staff there were almost like parents to her.
“They were just brilliant.”
Yvonne was then with the Brothers of Charity until she was about six, and then she went to Douglas Primary School, where she learned to read and write.
After that, from the age of about 12 until 17, she was at St Mary’s School for the Deaf in Dublin.
“She’d go up on a Sunday night with other children and an escort on the train,” Mags recalls.
“Then they would be back at the end of the week.”
She is currently attending a day care centre at John Birmingham in Glasheen, near Wilton, Cork City, which she goes to four days-a-week.
More than once in the interview with the , she mentioned her hope her daughter would die before her.
Asked if these are words she probably never felt she’d ever have to say, she replies: “It's a horrible thing to say.
“But I would love it if Yvonne died one day before me, so that I could have one day of peace and not be full of fear of what is going to happen to her when I die.
“Looking after her has been quite, quite tough as well as quite fulfilling.
“I love Yvonne to bits and I hate that the day will come when I will have to part with her, but I'm getting older and it's getting harder.
“You know, I am not the fit 20-year-old that I used to be, and Yvonne is very strong.
“I am an old age pensioner. Yvonne is 40. Life is tough.
“She will be with me till the day I die.
“We were told from day one that Yvonne would be looked after from cradle to grave, until the day she died.
“About two years ago I found out that — no, that's not the case.”
By “finding out”, she means during a chat with a health professional she asked what would happen to Yvonne if Mags and Jimmy were not around.
“The answer shocked me,” she says.
“I was told Yvonne would be brought into emergency care before being moved to a nursing home.
“She would be — in effect — put out to tender, and whoever bids the least for her care would get the contract.
She adds: “The disturbing thing is that her long-term care could end up being anywhere in Ireland.
“Now distance is the new institutionalised abuse.
“Yvonne could be placed hundreds of miles away in the back of beyond.
“Then, her family is gone, her community gone, her life gone but importantly, her service provider — her day centre — is also gone.
“She lives for that. Without that, her life is ruined.”
So concerned has Mags become about what will happen to her daughter after she dies she has joined Before We Die.
“I joined the BWD campaign because I was on my own for so many years fighting this system, and now instead of being on my own, there's loads of us.
“There's hundreds, hundreds of us. I was only a drop in the ocean, and now we are an ocean.”
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