Help bring Ruby home to Ireland from New Zealand

https://youtu.be/eVXBGauiDBw 

 

Help bring Ruby Rose home to Ireland

We need your help to bring little Ruby Rose home to Ireland.

My sister Kerry and her partner Bryan have lived in New Zealand for over 8 years. Originally from County Kerry in Ireland, they first met in Christchurch. They moved as individuals for the rebuild of the city following the Christchurch earthquake but found each other and have set up a lovely life for themselves, starting a family, getting engaged and have built a fantastic community of friends over the years.

Their beautiful daughter Ruby Rose was born here on 7th June 2017. Ruby was born with a rare genetic disorder known as TBCK. Ruby is one of under 70 known cases of this rare genetic disorder in the world and the only case in New Zealand.

TBCK Syndrome is a life limiting autosomal recessive neurological disease that causes intellectual disability, epilepsy, and developmental delay. Ruby is dependent on others for all aspects of her care. Ruby is wheelchair dependent, non-verbal, has brittle bones and has a CVI vision impairment. She also has respiratory difficulties which makes flying a lot more challenging, especially long haul which requires her to have an additional medical oxygen supply for the trip.

https://tbckfoundation.com/

Kerry and Bryan had been on Essential Skill Work Visas at the time of Ruby’s birth. Unbelievably, although born here 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. 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 3 years for their residency. They have received numerous disheartening rejections solely because of Ruby’s health condition.

In January 2020, Ruby (2 at the time) was served 21 days’ notice to leave New Zealand as her previous Visa application had also been rejected, and she was to be here illegally in the eyes of Immigration NZ. However, a Section 61 appeal allowed for a further 3 months for Kerry and Bryan to sort out their affairs as they had made the difficult decision on the back of the visa rejection to pack up their life and move home to Ireland in April 2020. Then Covid struck, and they had to cancel everything and hunker down in New Zealand. Even in this global pandemic, they are still being forced to fly halfway across the world with a very vulnerable little girl that has a compromised immune system.

 

Ruby Rose is an extraordinary little girl. 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. 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. Ruby has an infectious laugh and wins the hearts of anyone who meets her. You know instantly what mood Ruby is in and she has her own very special way of communicating her wants and needs. 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.

Ruby’s health has been up and down over the years with numerous hospital admissions. Several medical interventions and surgeries have been carried out to ensure that Ruby is kept comfortable and happy and to alleviate her from any of the negative aspects caused by her condition. Unfortunately, in May 2021, Ruby suffered a severe seizure and aspirated causing her a double lung collapse. Ruby was transferred to PICU in Starship Hospital in Auckland and was on life support for 2 weeks. Again, the medical professionals worked tirelessly and believed in Ruby with us all hanging on by her bedside. She proved she is a little fighter and made a miracle recovery and returned to her full health to the doctors' disbelief. 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. Ruby had too very near-death experiences in 2021 which has been very traumatic for both parents. Bryan and Kerry never gave up on their little girl and keep fighting every day for her to have the best quality of life possible.

Ruby became a big sister to a healthy little boy called Leon in July of 2021. Leon has brought much joy into our lives at this difficult time. However, with the latest hospital admission and the upcoming expiration date of Ruby’s Visa, Kerry and Bryan have been forced to decide that returning to Ireland is the best and only decision for them. They will bring Ruby and Leon home to start from scratch and build a life in a country that won’t reject them based on the health condition of their beloved daughter.

The move to Ireland will be emotionally and financially draining on this young family. Kerry and Bryan have booked one-way flights for the family in March.

Ruby requires various aids and apparatus with walkers and standers to help her build strength for her muscle development. 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.

I want to set up this page to try and make their impossible move a little easier and as seamless as possible as they have so much to organize and worry about. 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.
A charitable donation will be made to the TBCK Foundation with  funds raised following the move home to help with further research into this extremely rare genetic disorder.

Thank you for reading.

Denis