Connect with us

News

Plea for funds for little girl with rare condition

Published

on

0220374_630209331643702125981128r.jpeg

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.

Advertisement

News

Credit Union launch a new collaboration with Gilroy’s Green Energy Ltd.

Building on recent success the Credit Unions of Kerry and West Limerick have launched a new collaboration with Gilroy’s Green Energy Ltd. Gilroy’s Green Energy Ltd specialise in Photovoltaic (PV) […]

Published

on

0274633_credit_unions_and_gilroysie__1.jpg

Building on recent success the Credit Unions of Kerry and West Limerick have launched a new collaboration with Gilroy’s Green Energy Ltd.

Gilroy’s Green Energy Ltd specialise in Photovoltaic (PV) Solar systems that generate electricity, battery storage, air to water heat-pumps and much more.
Gilroy’s work with customers to receive the SEAI once-off grant towards the purchase and installation of solar photovoltaic (PV) systems and heat pumps for your home.
Collaborating with Kerry and West Limerick Credit Union expands the finance options available to Gilroy’s Green Energy Ltd customers to help finance new PV Solar Panel installations. Loan rates will be directly linked to the property BER starting from 4.7%(4.89APR) for an “A” rated BER.
Martin Gilroy; CEO with Gilroy’s Green Energy Ltd said: “We are delighted to officially launch this collaboration with the Credit Unions of Kerry and West Limerick. Customers have already reaped the benefits on recent installation projects after contacting their local Credit Union. Having a direct link to local Credit Unions allows us to guide customers to affordable financing options based on the specific installation quotation we provide at very competitive rates.“
Speaking on behalf of the Kerry and West Limerick Credit Unions, Ashley Fitzgerald added: “We are delighted to have Gilroy’s Green Energy Ltd come on board as part of our Greener Homes Loan offering. Home Energy Upgrade have become a prominent concern and talking point among members in recent months, by Credit Unions having a direct link with Gilroy’s Green Energy Ltd allows both sides to make referrals and seek the best finance option for members. We are working hard building relationships with Green Energy Ltd providers as we want to ensure our members can avail of the best loan rates for all upgrade works.”
Credit Unions across Kerry and West Limerick. Abbeyfeale Credit Union, Cara Credit Union, Killarney Credit Union, Listowel Credit Union and Rathmore and District Credit Union can be reached via: www.creditunion.ie
Gilroy’s Green Energy Ltd can be contacted on 066-7115920, email info@gilroys.ie or for more information visit www.gilroys.ie.

Continue Reading

News

Racegoers Club to host Cheltenham Preview Night

Killarney Racegoers Club will host its annual Cheltenham Preview Night in Corkery’s Bar on March 7. Admission is free and this year’s chosen beneficiary is the Killarney Branch of St […]

Published

on

0274585_2405117.jpg

Killarney Racegoers Club will host its annual Cheltenham Preview Night in Corkery’s Bar on March 7.

Admission is free and this year’s chosen beneficiary is the Killarney Branch of St Vincent De Paul Society.
The expert panel includes professional punter Paddy Wilmott, leading jockey Conor McNamara, up-and-coming Kerry-based trainer Eoin McCarthy and local bookmaker Brendan Tyther with Vince Casey acting as the event’s compere.

“There is no admission fee but a raffle on the night for dual membership of Killarney Racegoers Club for the year, which includes 13 days racing and many reciprocal days to other race meetings,” said Mr Casey.

The Cheltenham Festival begins on March 12.

Attachments

Continue Reading

Last News

Sport