Zavier's Give A little

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