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.