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Plea for funds for little girl with rare condition

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By Michelle Crean

Almost €25,000 has been raised within two days for a Killarney family whose little girl has a very rare genetic condition.

Killarney man Denis Hayes set up a GoFundMe for his New Zealand-based niece who is only one of under 70 known cases in the world and the only case in New Zealand with TBCK Syndrome, a rare genetic disorder which is a life-limiting autosomal recessive neurological disease that causes intellectual disability, epilepsy, and developmental delay.

Denis’ sister Kerry Hayes and her partner Bryan O'Connor have lived in New Zealand for over eight years. On June 7, 2017 their daughter Ruby Rose was born.

Both were on Essential Skill Work Visas at the time of Ruby Rose’s birth however, even though Ruby Rose was born in NZ, she has never been granted a permanent visa as she doesn’t meet New Zealand’s immigration medical requirements and her temporary visitor visa expires next month.

Now the family want to come home to Kerry but face a huge cost due to their little girl’s medical needs.

According to Denis, who also lives in NZ, his sister and her partner have spent thousands over the past three years on their residency.

“I have witnessed first-hand the painstaking hours and thousands of dollars spent by both Kerry and Bryan in making multiple immigration applications. They have received numerous disheartening rejections solely because of Ruby Rose’s health condition.”

In January 2020, Ruby Rose, who was aged two at the time, was served 21 days’ notice to leave New Zealand as her previous visa application had also been rejected. An appeal allowed for a further three months for the couple to sort out their affairs, then COVID struck. They had to cancel everything.

FINANCIAL COST

However, with the visa running out next month the family are keen to get home - but face a huge financial cost.

Their daughter, who is non-verbal and non-mobile, is described as “an extraordinary little girl” who “has an infectious laugh and wins the hearts of anyone who meets her”.

He explained that Ruby Rose’s health has been up and down over the years with numerous hospital admissions including suffering a double lung collapse. She made a miracle recovery but suffered more health set backs.

The couple, who also have a young son Leon, have booked one-way flights for the family in March.

He said that Ruby Rose requires various aids such as walkers and standers and will need specialist equipment on the Irish side once they land. Kerry and Bryan will also have to find suitable accommodation and a wheelchair-accessible vehicle to ensure that they can get Ruby Rose transported safely when they get home.

Denis is hoping the GoFundMe "will help make their move a little easier help reduce the financial burden on them just a little so they can focus on getting Ruby Rose and little Leon back to Ireland in one piece on this massive journey across the world".

To donate go to GoFundMe: Help bring Ruby home to Ireland from New Zealand.

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Council to write to Minister over hospital opening delay

Kerry County Council members are to write to the Minister for Health and the Health Service Executive (HSE) to express frustration over the continued delays in opening the new Killarney […]

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Kerry County Council members are to write to the Minister for Health and the Health Service Executive (HSE) to express frustration over the continued delays in opening the new Killarney Community Nursing Unit.

The decision follows a motion brought forward by Councillor Maura Healy-Rae at Monday’s full council meeting in Tralee.
In her motion, Councillor Healy-Rae highlighted that despite the urgent need for the facility, recent information revealed that the Health Service Executive has not discussed additional staffing requirements with the Irish Nurses and Midwives Organisation (INMO) since May 2025.
Members of the council supported the call, expressing disappointment that the opening of the unit remains stalled. The letter to the Minister for Health and the Health Service Executive will formally outline the local authority’s concerns regarding the lack of progress and the apparent breakdown in communication over the staffing levels necessary to make the unit operational.

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JOE GAFFEY RIP A PERSONAL TRIBUTE

  By Eamonn Fitzgerald It was always uplifting to see and greet Joe Gaffey enjoying his work in Killarney. He kept the windows so clean, saying clean windows make a […]

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By Eamonn Fitzgerald

It was always uplifting to see and greet Joe Gaffey enjoying his work in Killarney.

He kept the windows so clean, saying clean windows make a great first impression, allowing natural light to enter, and helping to reduce energy costs.
He took such pride in his window cleaning business. I said, “Joe, even the humble flies are afraid to land on your cleaned windows”. Quick as a wink, he responded, “they’re afraid of skidding on my spic and span windows, like a jet crash-landing in these downpours”. With the trademark cloth whipped from his back pocket, he was back at work.
He loved the craic and the banter, but when it came to soccer, he was deadly serious, a brilliant player with Fossa FC (now extinct) where I first got to know the star player from Athlone and Jock (Alex Rintoul), his great teammate.
Teak tough, but a scrupulously fair defender, Joe was a godsend for the Fossa’s keeper. Not even the speediest inside forwards could get past him. He was a believer and practitioner of the Biblical and Lord of the Rings dictum ‘thou shalt not pass’. Not a blunt stopper, but you just could not get by such was his defensive skill and perfect timing, the sine qua non for brilliant players in any sports code. That lethal left leg, that trusted ciotóg never failed. He had the same sense of timing playing golf.
In previewing the 1976 All-Ireland final versus Dublin, I asked several members of the general public and GAA enthusiasts to predict the outcome for the Killarney Advertiser. All predicted a definite win for Kerry. A repeat of ‘75 was a dead cert. Joe was the only one to get it correct: a surprise win for the Dubs. He got a lot of mileage out of that episode.
How he would have loved Westmeath’s fairytale win over fancied Meath on Sunday last, his final day. Ach bhí an t-am istigh. The ref called for the ball. Game of life over, but our fond memories of Joe will endure. We’ll miss his professional expertise and his endearing and unfailing good humour. Slán abhaile Joe.
To his wife Julie, sons Darren and Jonathan, his extended family and his many friends and admirers, comhbhrón ó chroí.

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