When soil can be a killer: Father’s rare bone marrow gift for his immune-deficient son

Wednesday, 4 March 2026

Jytique Russell is one of about 15 Kiwis with rare genetic immune deficiency chronic granulomatous disease. Today, in one of New Zealand’s first adult bone marrow transplants for the condition, his dad hopes to gift him a cure. By Nikki Macdonald.

Training his six-year-old on the touch field, Matty Russell had the same vision as many Kiwi dads ‒ Jytique’s name in lights as an All Black or Kiwis great.

He had to let that go earlier than most when he found out his son might not make it to his 20s, and the barest smudge of dirt in a cut could be life-threatening.

For 13 years, Jytique Russell has shielded his faulty immune system behind a four-litre box of drugs. Covid was a treat ‒ for once, everyone was stuck inside the bubble with him.

Today, Matty hopes to deliver his son the most mundane of dreams, but one that means more than any rugby jersey ‒ the gift of a normal life.

Your body’s weak, but your mind doesn’t have to be

At first, the doctors thought it was hydatids ‒ a cyst caused by the dog tapeworm that’s supposed to have been eliminated from New Zealand.

They’d found an abscess on young Jytique’s liver, rare in a child. Jytique’s mum, Angelique Mackey, wasn’t buying it ‒ her kids were never around dogs.

But he bounced back with treatment, so on they went. But when a tennis ball-sized abscess appeared in a lymph node on Jytique’s neck about a year later, she figured that couldn’t be a coincidence.

“I said no, there’s an underlying issue.”

In all his long career as a doctor, Palmerston North paediatrician Jeff Brown has sent off maybe a dozen nitroblue tetrazolium tests. Two have come back positive.

Jytique had chronic granulomatous disease (CGD) ‒ a rare genetic condition affecting about 15 Kiwis, that means some of the body’s invader-fighting white blood cells are faulty and can’t fend off bacteria and fungi.

That makes the body susceptible to serious infections in the lungs, skin, bones and other organs. Fungal spores from decaying leaves could trigger life-threatening pneumonia.

So began the Feilding family’s first trip to Auckland’s Starship children’s hospital, and a childhood wallpapered with the sterile smell of sickbeds.

From the age of six, Jytique was pumped with preventive antibiotics and antifungals. Rugby and walks in nature ‒ anything involving soil or bark ‒ were out. The air in his room had to be purified. But still bugs would slip through, leading to months-long hospital stays.

Mostly, they never knew where the infections came from. It didn’t much matter ‒ they just knew they had to hit them hard.

“Anything that looks like an infection, you treat more aggressively,” Brown says.

And like any family with a sick child, everyone’s existence was transformed.

“It was like a whole lifestyle change,” remembers older sister Akhira, who was nine when Jytique was diagnosed. “Imagine telling a six-year-old he can't play on a playground.”

Matty begged time off from his boss at Affco’s Feilding meatworks. They were amazing, but sick leave never stretches far enough. The couple abandoned plans to move to Australia.

“Nothing can really prepare you for it, eh. It just come as a shock,” Matty says. “Life just changed completely … We had to just figure it out on the way.”

Akhira gave her mother up to the hospital bedside vigil. Night-time tuck-ins were out, learning to take Jytique’s observations was in.

“Every day after school, Dad would pick me up, we'd go to the hospital, stay there till like nine o'clock at night, come home, go to bed, go to school. It was a repeat process.”

But no-one was more affected than Jytique himself. There were more abscesses, including a major one in the lungs. Twice, the family was told to make funeral plans. Angelique wasn’t having it.

“I don’t know if that’s a survivor instinct, but I’ve never allowed myself to think ‘I’m never taking my son home’.

“It’s got us this far. And that’s what I always tell my son. We have to keep pushing. The moment we give up, is the moment you’re putting that energy up to the universe, and that’s it. You can’t have that weak mentality. Yeah, your body’s weak, but your mind doesn’t have to be.”

The 19-year-old chose not to be part of telling his story. He’s been having chemo to prepare his body for his father’s gift.

But those who love him say he never complains. And as the chemo took his first clumps of hair, he said to his dad, “This is what I signed up for”.

“He's always had that positive outlook,” Matty says. “He's always thinking about somebody else.”

Fixing the bug in the immune system

Doctors first talked about a bone marrow transplant when Jytique was heading to high school.

More commonly used for blood cancers like leukaemia, replacing the patient’s blood-forming stem cells in the bone marrow can grow new, functioning immune cells, explains immunologist Anthea Anantharajah.

“Because CGD affects white blood cells, replacing the bone marrow can correct the underlying immune defect and potentially cure the disease.”

It’s less risky as a child, before repeat infections have the chance to cause permanent organ damage. But it’s a rough road to recovery.

By the time it was an option for Jytique, he’d had a run of relative good health and discovered basketball. As sports go, it was lower risk as it was indoor.

And he turned out to be pretty good at it, making the Feilding High School and Manawatū representative teams.

So the family decided to delay any possible transplant to give Jytique the best shot at some teenage normality.

“We had to make that choice ‒ do we give up these cool years of his, and put him through this, and it could make him sicker for years,” Angelique says.

Jeff Brown remembers how hard that choice was.

“It’s a big step to take. It’s finding a donor who’s willing to do it, which is not straight-forward. It’s a risky process ‒ you have to wipe out your own bone marrow first, so you go through a window of really high risk. Then you get the transplant, and then you’ve got the risks of rejection.

“I remember discussing it with his parents, and with Jytique when he was older, and their choice not to go ahead when he was younger is entirely understandable.”

For most of high school, the choice paid off. Jytique wasn’t hospitalised much, Angelique says.

“It was really cool for him, to go overseas with his basketball, he just got to travel around New Zealand and the world doing what he loved.”

For a while, they almost felt like a normal family, Matty says.

“And eventually it come back to bite him, bite him hard.”

In Jytique’s last year of school, his immune system started to break down, Angelique says.

“He just had an infection, one after the other, and his body wasn’t healing … Without a bone marrow transplant, they told us he’d be lucky to make it to his 20s. Seeing the last year, you can see why. The body’s immunity ‒ it’s just not fighting back.”

Then in late 2024 he had his wisdom teeth out, and got an excruciating infection. They were told he might need all his teeth removed.

That was a “breakdown moment” for everyone, Matty says. Jytique became depressed, started not going to school or his weekend job at McDonald’s.

For his 18th birthday, all he wanted was a tā moko, a tattoo. But that was a no-go, too. Then, he had to give up his beloved basketball.

So they began searching for a bone marrow donor. There are about 13,000 registered donors in New Zealand, and about 40 million worldwide.

Often a sister or brother offers the best hope, but Akhira wasn’t a match. A donor was found in Germany, but that fell over. So they looked closer to home ‒ Matty. Despite the recovery time of up to two months, he didn’t think twice.

‘As a dad, obviously, I’ll do it … It doesn’t matter how much pain you go through ‒ you’re always here to set up your next bloodline. There was just no hesitation.“

As he puts it, it’s two months out of his life, for the whole of his son’s.

Like haemophilia, CGD can be passed down from a carrier mother to her son through an X chromosome. But in about a third of cases, known as autosomal recessive CGD, it’s inherited from both sides of the family.

That’s what Angelique and Matty say happened in Jytique’s case. There’s another case in Matty’s family line.

But being a carrier doesn’t necessarily rule out a donor, explains Anantharajah. To develop the recessive form of the disease you need two copies of the abnormal gene ‒ one from each parent.

So if someone has only one copy, they still have enough normal white blood cells to kill off bad bugs. And the fact immediate family share some genetics reduces the chance of the donor stem cells being rejected, Anantharajah says.

“These decisions are complicated and require multi-disciplinary discussions, often with experts around the world.”

At 46, Matty is also old for a donor. In New Zealand, you have to be aged 18-35 to donate. So he spent last year having tests in Auckland to check he was healthy enough.

So now, he’s in Auckland about to have two litres of blood and marrow extracted from his pelvic bone. That will be flown down to Wellington, where Jytique is waiting to receive it.

Jytique has been having pre-transplant chemo to both suppress his immune system to reduce the chance of rejection, and to create space for the new stem cells. His hospital room is prepped too ‒ he’s brought his Call of Duty gaming setup to while away his post-transplant isolation.

And Angelique has flown back from Australia, where she’s been working as a wool classer. She might be here two months or six ‒ whatever it takes to get Jytique through the recovery period ahead. The family has set up a Givealittle page to help cover expenses.

Because adult transplants are more complex and risky, patients have historically had to go overseas to get them, Anantharajah says. Jytique’s will be one of the first adult transplants here for CGD.

“Being able to deliver this treatment locally marks a significant milestone for our centre and for New Zealand. For patients and their families, it means access to potentially curative therapy closer to home.”

For paediatrician Jeff Brown, the news of Jytique’s transplant is “superb”.

“Any time you’re looking after someone with a chronic condition that is potentially made either better or even more than that, cured, it’s fantastic. Because you’ve gone on a long journey with them. And the journey isn’t always a happy one ‒ you’re helping them through a life that’s different from their mates.

“It’s hard on the growing child, on their family. And that’s our job. it’s what I train for. I was over the moon.”

Jytique’s family know there are risks ‒ they’ve read all the bad things that can happen. And they’ve already had one false start ‒ the transplant was scheduled for December but was cancelled when Jytique got a lung infection.

But Angelique isn’t going there.

“People are like ‒ are you scared? No, I’m not. I don’t let myself feel negative thoughts for him … That’s why he’s gotten this far, because that’s how he thinks, too … We’re going to get to the end, things are going to get better.”

Akhira is excited to see her brother finally make plans for a future he hasn’t dared to imagine.

And his grandmother, Millie Simon, sobs as she wills her grandson to be free.

“He just wants to live normal ‒ it breaks my heart … He is sick of it. He is sick of being a pincushion. He never moans, he never grumbles. He is a good boy. And he deserves better.”