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heartbreaking Irish girl with rare disorder forced to leave New Zealand after her visa is rejected

Her family are raising funds for vital equipment

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Ruby Rose must return to Ireland

Ruby Rose must return to Ireland

Ruby Rose must return to Ireland

An Irish family living in New Zealand are currently desperate to raise funds to bring their daughter back to Ireland.

Ruby Rose, who lives in Christchurch, New Zealand with her parents Kerry and Bryan, has a rare genetic disorder, TBCK.

While there are less than 70 known cases of the disorder worldwide, Ruby is the only known case in New Zealand.

The disorder is a life limited autosomal recessive neurological disease that causes intellectual disability, epilepsy, and developmental delay.

Ruby is dependent on others for all aspects of her care as she is wheelchair dependent, non-verbal, has brittle bones and has a vision impairment.

She also has respiratory difficulties which makes air flight a lot more challenging, as she is required to have an additional medical oxygen supply for the trip.

The four-year-old now must return to Ireland, where she was born in 2017, as her visa application to remain abroad has been rejected.

“Kerry and Bryan had been on Essential Skill Work Visas at the time of Ruby’s birth,” Kerry’s brother Denis said.

“Unbelievably, although born in NZ, Ruby has never been granted a permanent visa because she doesn’t meet the medical requirements put in place by Immigration New Zealand.”

“Ruby is still on a temporary visitor visa which expires in March 2022.”

On the GoFundMe page created in a bid to raise funds to move Ruby home, Denis wrote: “I moved to New Zealand myself in 2019 and I have witnessed first-hand the painstaking hours and thousands of dollars spent by both Kerry and Bryan in making multiple immigration applications over the past three years for their residency.”

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“They have received numerous disheartening rejections solely because of Ruby’s health condition.”

Her uncle Denis described Ruby as an “extraordinary little girl” as he paid tribute to her incredible parents.

“Kerry and Bryan have been outstanding in the life that they have provided her here in New Zealand with limited family support.”

“The team of medical professionals and specialist therapists that have worked with Ruby over the years have been amazing.”

“As Ruby is the only known case with this condition in NZ, much research and active learning have been carried out to fully understand how to meet Ruby’s needs.”

The family have booked one way flights home to Ireland in March.

Ruby requires various aids and apparatus with walkers and standers to help her build strength for her muscle development, the family are fundraising money to help her once she moves home to Ireland.

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“They will need to source specialist equipment on the Irish side once they land. They will spend a lot of time and energy getting Ruby into the specialist care system in Ireland to build a professional team to provide expert care as necessary when they return.”

“Kerry and Bryan will also need to find suitable accommodation and a wheelchair-accessible vehicle to ensure that they can get Ruby transported safely when they get home.”

Describing the incredible young girl, Denis said: “Ruby is nonverbal and non-mobile, but she loves nothing more than spending time in the swimming pool with the sensory effect of the water, assisted pony riding and loves to spend time in sensory rooms with music and lighting being her favourite.”

“She has an infectious laugh and wins the hearts of anyone who meets her.”

He also praised the incredible support network that her parents have.

“The team of professionals and the wider community of families with special needs children here is a great help to both Kerry and Bryan and they have made many amazing friends in Christchurch.”

“Ruby has many friends here who adore her in preschool which she has recently graduated from and at her Conductive Education Therapy Center and Blennz playgroup.”

In May 2021, Ruby suffered a severe seizure and aspiration causing her a double lung collapse.

She was transferred to PICU at a hospital in Auckland and was on life support for 2 weeks.

“She proved she is a little fighter and made a miracle recovery and returned to her full health to the doctors' disbelief,” Denis explained.

“Ruby got back to her full weekly schedule and gained great strength over the next few months but was rushed into hospital again in November 2021, being admitted to ICU again and was critically ill.”

“Ruby once again proved the doctors wrong who this time had very little hope for her to pull through.”

Denis is asking for any donation to try and make the move a little easier and as seamless as possible.

“Hopefully, we can all come together and 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.”

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