Parents Danielle Simpson and Matt Hull took Zavier to a GP because he was having issues with walking.
“We’ve always thought he may have had a developmental delay with his legs, so we just wanted to get the ball rolling to see if there were exercises he could do or if we needed to see a specialist,” Simpson said.
Zavier was sent to the paediatric ward at Whanganui Hospital to have blood tests.
“That evening, they called and said he needed to come back within an hour to be flown to Starship,” Simpson said.
The Whanganui results showed Zavier’s kidneys were operating at around 8%.
After further testing in Auckland, the kidney diagnosis was made.
A Health NZ Te Whatu Ora spokesperson said there were five children aged 3 years or under currently having kidney dialysis in New Zealand.
“There are 11 children in total up to 16 years old having dialysis.”
If a kidney match is found, Zavier will spend at least another month at Starship.
Until then, he needs daily dialysis at home in Whanganui, with a flight to Auckland once a week.
“Apart from his legs, he seemed perfectly healthy, and even now, he still seems exactly the same,” Simpson said.
“That’s been really hard to wrap our heads around.
“[The specialists] said if he were an adult, he would be bedridden – really, really sick.”
She said an initial potassium reading showed Zavier’s level was 16%, with a healthy level for a child his age being between 3% and just under 5%.
“If you have too much potassium in your body, it can lead to a heart attack, so a whole lot of professionals ran in and hooked him up to machines in case that happened,” she said.
“That was horrible. We were mentally preparing to say goodbye to our son if they weren’t able to help him.”
A rerun of bloods showed the first result as inaccurate.
“It’s no one’s fault, it was just very, very traumatic,” Simpson said.
“Honestly, everyone has been incredible. When we leave here, we have to make regular donations to Starship and Ronald McDonald House.
“Every single person we’ve encountered has been amazing.”
Simpson said while at Starship, she and Matt would be taught how to use Zavier’s dialysis machine.
A Givealittle page has been set up to help the family.
They have two other children, and “life has to go on back home”, she said.
“I’ve definitely hit the stage of ‘Why him? This isn’t fair’.
“Even if he gets a transplant, we will have to do it all over again down the line.
“His whole life is going to be different.”
Donations to Zavier and his family can be made at givealittle.co.nz/cause/zaviers-give-a-little
Mike Tweed is a multimedia journalist at the Whanganui Chronicle. Since starting in March 2020, he has dabbled in everything from sport to music. At present his focus is local government, primarily the Whanganui District Council.
