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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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Wine, art and lots of catching up at popular fundraiser

By Michelle Crean Spirits were high and the atmosphere electric at this year’s Wine & Art Night which had a huge attendance on Wednesday night. Over 50 exhibitors gathered in […]

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By Michelle Crean

Spirits were high and the atmosphere electric at this year’s Wine & Art Night which had a huge attendance on Wednesday night.

Over 50 exhibitors gathered in the Great Southern Killarney as the Killarney Rotary Club’s fundraising event – which is one of the biggest in the town each year – was back after a COVID break.

During the afternoon the artists and crafters, many who travelled from all over Kerry, Clare, Cork and even Waterford this year, organised their display for the event. Later that evening there were a lot of familiar faces but also some new people who absolutely loved the evening.

There were many wines available to taste as well as cheese and breads at the event which is run in conjunction with Daly’s SuperValu, Killarney and Killarney Brewing Company.

“There was a huge attendance and everybody was in good spirits to be back to normal,” President of Rotary, Rayla Tadjimatova, said.

“Many of the patrons were buying some art as Christmas presents and the members of Rotary were delighted to be kept busy packing these. A portion of all art sales goes to the fundraiser. One local young man, who is only 16, exhibited his beautiful photographs of local scenic areas. There was an auction of donated works of art and a Kerry Jersey. All one hundred percent of the proceeds from this auction goes to the fundraiser.”

Mike Neeson entertained the crowd on arrival and right until the end of the night.

“Mike is a great supporter of our events and we would like to thank him for keeping everybody entertained.”

The Irish Pilgrimage Trust ran the raffle and they had some wonderful hampers and gifts to be won.

Beneficiaries from this year’s event are: Coolick NS, Gaelscoil Faithleann NS, Knockanes NS, Holy Cross Mercy NS, St Francis Special School, Kerry Stars, Killarney Athletic AFC, and Killarney Cougars Basketball Club.

She thanked everybody for attending and everyone for their help organising the event.

Some, she added, had never been before and said they did not know what exactly the night involved but will definitely be back again next time as it was “so enjoyable”.

“We hope the money raised will help the beneficiaries to proceed with projects,” she said.

“We are delighted for Rotary to be able to help these charities, community groups and schools through our fundraising event.”

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Comedy drama ready for the stage

By Michelle Crean Get out your diary and book in these December dates as Dochas Drama Group is ready to take to the stage. What does a hypochondriac, a grumpy […]

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By Michelle Crean

Get out your diary and book in these December dates as Dochas Drama Group is ready to take to the stage.

What does a hypochondriac, a grumpy father and a confused visitor to the dentist, all have in common? You’ll have to come along to the Killarney Avenue Hotel on Monday, December 12, Tuesday 13 and Wednesday 14 at 8pm to find out.

The popular drama group will present their three new comedies featuring the work of playwrights Brian Bowler, Ger Madden and Mary Quirke.Come along for a night filled with fun and laughter. Just the right beginning to the festive season. Doors open at 7.15pm and tickets are available at the door. All tickets; adults, seniors, students and children are €10. Don’t miss a great night out.

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