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Zavier's Give A little

  • 28th August Update.

      28 August 2025
    Posted by: Matt Hull
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    We wanted to share the latest update on Zaviers situation, both Matt and myself (Danielle) have been confirmed as a suitable kidney match for him! we are currently waiting for the surgery date for Matt to donate one of his kidneys to Zavier. We will be in Auckland for a minimum of 6 weeks during their recovery, the very generous donations we received from this page have been tucked away and will be used to help with financial expenses during this long stay, so thank you! It has really helped relieve the stress a bit.

    We had results back from our genetic specialists that we had been waiting for since our stay in starship and they have come back with news we definitely were not expecting, they believe Zavier has Occipital Horn Syndrome (extremely rare, you can Google) "Occipital horn syndrome (OHS) is a very rare X-linked disease and the exact prevalence is unknown. To date approximately 35 cases have been reported and all but one were male." Our 2 older children are now also being tested to see if they carry the same genetic condition as I am a carrier of the APT7A gene "error".

    We are working with Drs, Nurses, Nephrologists, Physio therapists, Orthopedics, Genetic specialists, Metabolic specialists, Surgeons, Transplant co-ordinator, Medical suppliers, pharmacists and more. The care we have received from all of them is beyond incredible.

    Thank you all for your all of the love, kindness and support.

    Danielle + Matt

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  • 14th June Update.

      14 June 2025
    Posted by: Matt Hull
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    Quick update on Zavier:

    He’s been home since the start of the month and is doing really well, all things considered. There have been plenty of ups and downs, including some scary moments, but he’s a trooper and determined to get better.

    Home dialysis has been going well. We’ve been working together to keep everything running smoothly, taking turns with the alarms during the night. We haven’t had many days off due to different circumstances, but we’re managing, and Zavier is handling it like a champ.

    This journey has definitely affected our jobs, with a lot of time off needed, but we’re so grateful our workplaces have been understanding and supportive.

    Starship has been just a call or text away whenever we’ve needed help, which has been a huge relief. Whanganui Hospital has also been great with making sure we have the supplies we need when we run low.

    In the past few days, Zavier has asked for a puppy and a racecar—thanks to some friends who visited and sparked those ideas!

    We’ll be heading back to Starship at the start of July for a dialysis review and to discuss next steps toward transplant.

    It’s going to be a long road ahead, but we’re taking it day by day. Thank you all so much for your continued love and support—it really means the world to us.

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  • Thankyou.

      14 May 2025
    Posted by: Matt Hull
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    We will never be able to thank every single one of you individually, but please know that we have read every single comment and every single name attached, you will all forever hold a place in our hearts. The wrap around love and support we have been shown during this experience will never be taken for granted of forgotten. Genuinely, thank you!

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  • 5th May Update

      5 May 2025
    Posted by: Matt Hull
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    We just wanted to share an update on Zavier and take the time to thank everyone for chosing to support our family during this time. Zavier is on cycle 2 of Peritoneal Dialysis for End-Stage Kidney Disease, but doing really well with the treatments so far. We are just trying to take each day as it comes but also being realistic and know that his future will entail daily dialysis until he will eventually need and get a kidney transplant. Our lives have been completely flipped upside down but as most parents would, we will do anything to ensure zavier is kept as healthy as he can be. Many thanks again, your support is appreciated more than we can put into words!

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