Boy, 9, with life-threatening condition needs bone marrow transplant (2024)

You could have the free and life-changing ingredient needed to help a nine-year-old Rotorua boy who suffers from a life-threatening condition.

Te Waarakihi Felise has aplastic anaemia, a condition that occurs when the body stops producing enough blood cells.

He’s fatigued and prone to infections and uncontrolled bleeding.

Te Waarakihi’s spent months in Ronald McDonald House undergoing treatment and tests at Starship in Auckland.

A pathway to recovery is a bone marrow transplant, but the donor needs to be a genetic match and on the bone marrow registry.

Right now there are no matches anywhere in the world. Here’s where you come in — you or someone you know could be the legend who changes Te Waarakihi’s life.

Everything changed

Up until last year Te Waarakihi was like any other Kiwi nine-year old. He loved having fun with his mum Sherene and his mates at school.

“He’d go to school, play sport, he did kapa haka,” Sherene told Breakfast.

“Very active child, very outgoing, very happy, very cheeky.”

But early this year everything suddenly changed.

“I went to work and my parents were watching him and they texted me halfway through my shift and said he was quite yellow, his eyes were going yellow, so they took him to the hospital and that’s where it all started,” Sherene said.

Their world was turned upside down in February when Te Waarakihi was rushed to hospital in Auckland.

“He needed blood transfusions, he was low in all of his bloods … so they needed to start blood transfusions straight away.

“I just went into mum mode I guess and just sort of blocked everything else out and just focused on my son — that was the most important thing for me. It was hard but I have an amazing child so he made it so much easier.”

Te Waarakihi’s grandmother Mahara Hooper said the whole thing has been a huge shock.

"It really rocks your family. One moment everything is going along quite normally and routine and then the next minute you're completely out of kilter. So it certainly makes you reflect on life itself,” Mahara said.

The diagnosis

Tests revealed a rare and life-threatening illness: Aplastic anaemia.

"His bone marrow has stopped working and so he's had no new blood cells forming in his body and that's why his blood cells were so low."

"Blood cells do different things. Red blood cells carry oxygen around your body, so it gives you energy pretty much. The platelet blood cells are clogging cells, so that's why he kept getting nose bleeds because there was no clogging from stopping that from happening. And his white blood cells are his immune, so his little soldiers, and that's why he can get sick really easy and when he gets sick, there's nothing to heal him."

The condition is extremely rare; the average reported incident is around two to seven cases per million people.

Te Whatu Ora Starship paediatric oncologist Dr Chia Huan Ng said aplastic anaemia is a bone marrow disorder whereby the normal function of bone marrow is affected by a variety of reasons.

“For the majority of the cases, we can’t find an underlying cause and so idiopathic (meaning the cause is unknown) aplastic anaemia is the diagnosis in most children,” he said.

Bone marrow transplant

When Breakfast spoke to the family Te Waarakihi and his mum had been staying at Ronald McDonald House for more than two months.

Te Waarakihi is undergoing immune suppressant therapy, but what he desperately needs is a bone marrow transplant.

Bone marrow is the body’s “factory” where most of the blood cells are made. A transplant is when damaged cells are replaced with healthy marrow — it can restore normal function of the bone marrow.

“Bone marrow donation from a suitable donor can cure patients with aplastic anaemia,” Te Whatu Ora Starship paediatric oncologist Dr Chia Huan Ng said.

Finding a donor match

The challenge is finding a donor match on the bone marrow registry. Te Waarakihi’s donor needs to be someone whose bone marrow cells closely match his.

"So his dad and I are 50% matches to him and then there could potentially be somebody out there that could be a full match,” Sherene said.

Right now there is no-one on the bone marrow registry that matches Te Waarakihi.

“Having a fully matched bone marrow donor means the patient will be able to undergo a bone marrow transplant, which can cure aplastic anaemia,” Ng said.

“A good match donor increases the success rate of transplant and decreases the complications following a transplant.

“We do specific tests called HLA (Human Leukocyte Antigen) matching on bone marrow donors via blood tests. It can also be done as a cheek swab. When two people have the same HLA type, they are considered a ‘match’.

"We all inherit 50% of HLA from each of our parents. Hence, every sibling has a 25% chance of being a full match. There is also a chance that someone unrelated to you can be a full match if you share the same HLA type.”

Genetics play a crucial role

While the family is urging anyone who meets the criteria (those aged 18-35) to join the bone marrow registry, the most likely donor match for Te Waarakihi wil be Māori or Pasifika, or both.

Of the 40 million donors registered worldwide, just 9000 are Māori or Pasifika.

The more donors we have in the bone marrow donor registry, the higher the chances of a patient finding a match,” Ng said.

“Some HLA (Human Leukocyte Antigen) markers are less common and hence these patients are harder to find a match.

"We are more likely to match with someone of similar ethnic background or ancestry. So sometimes, it can involve a bit of a luck as to whether we can find a donor for a patient.”

Sherene is urging everyone aged 18-35 to consider signing up to the registry.

“Really we’re pushing that people go and get their bloods done and they go on the bone marrow registry because they could save a little kid's life,” she said.

"If you could save somebody's life, imagine saving somebody's life, imagine how that would feel, even if it was just one person."

Uncertain future

Te Waarakihi is not able to go to school, while Sherene has given up work to look after her boy.

Te Waarakihi’s grandmother Mahara said the family remain hopeful.

“We like to go camping so we've got a caravan we go away and camp in, and Te Waarakihi loves motorbike riding so we’re looking forward to seeing him back on his motorbike.”

Since Breakfast with the family, Te Waarakihi has taken a turn and is now back in Starship with his mum.

Sherene is putting on a brave face, the odds are stacked against her son. You could be the one to help this family or another.

If you’re aged 18-35 you can sign up to the bone marrrow registry or sign up at any blood donation centre near you.