Most boys Te Waarakihi Felise Hooper’s age want toys, games and lollies for their birthdays - but the Rotorua boy is likely to be happy with just one thing when he turns 10 on Monday – a bone marrow match.

But finding a donor is proving difficult.

For now, the Otonga Primary School pupil is doing his best to get on with life while battling his rare blood disease that saw 2024 being the worst year of his life.

Te Waarakihi’s condition, aplastic anaemia, means his bone marrow has stopped working. He needs a bone marrow transplant to get better but, given his Māori and Pacific heritage, there are not many donor matches on the worldwide registry.

Te Waarakihi Hooper Felise needs a bone marrow transplant but there are not enough Māori or Pacific Island donors.

The Rotorua Daily Post featured his story in April last year as his family started a campaign to get more people to donate.

In February, Te Waarakihi went from being a fit, cheeky, and happy little boy to becoming out of breath.

He suffered nose bleeds and uncontrolled bleeding before his condition quickly worsened and he became physically sick with dots appearing on his body.

He was rushed to Rotorua Hospital’s emergency department before being flown to Starship Children’s Hospital.

His condition means he has stopped producing red blood cells (cells that carry oxygen around the body), white blood cells (infection-fighting cells) and platelet blood cells (clogging cells).

Te Waarakihi Hooper Felise when he was in hospital.

The only way he will get better is with a transplant. But his family’s hopes that he could make a quick recovery were dashed when there were no fully matched bone marrow donors found on the global Bone Marrow Donor Registry.

His chances of a match are further reduced because he is of Māori and Pacific Island descent and the donor pool is smaller.

Te Waarakihi will celebrate his 10th birthday on January 6 - but his battle is still on a knife edge.

His mother, Sharene Hooper, said her son started an alternative treatment, immunosuppressive therapy (IST), but it was too early to determine if it was successful.

“We are doing the IST treatment and so far it is working but his kidneys don’t like this medication.”

It will be tricky balancing his medication to ensure his energy levels don’t drop too much. Part of his treatment means he needs to drink four litres of water a day, something Hooper said was difficult at the start.

“We are in a new routine now and he drinks a litre before school and we manage to get the rest into him during the day.”

Improving for now

He slowly started to return to school a few months ago. He started with one day a week and had slowly built up to five by the year’s end.

Hooper said Te Waarakihi had to wear a mask in class because the treatment seriously affected his immune system.

He also still needs one or two blood tests a week and goes to Starship at least once a month for treatment.

“He fades pretty quickly but he does his best.”

Nursing her son through this ordeal has inspired Hooper to make a career change.

She had to give up working in the beauty therapy industry to look after Te Waarakihi last year but now she has a renewed interest in nursing and wants to help others in the same situation. She will start her three-year degree at Toi Ohomai this year.

Hooper said it was nice to see her son having a routine at school again but she was always aware his body could reject his treatment at any point.

She urged anyone particularly of Māori and Pacific Island descent to look into donating their bone marrow. If they couldn’t do that, donating blood regularly always helped, she said.

“If not for Te Waarakihi then for others. There are still heaps of kids and adults that need help. When we were up in Auckland at Starship for all those weeks we saw all the really sick children and it’s really sad.”

The fight to find a donor

New Zealand Bone Marrow Donor Registry search co-ordinator Paulette Tasker said Te Waarakihi’s family was fantastic at leading a campaign to get more people to be donors.

She said the registry had 272 people join in the past six months. It was possible some joined after hearing through the media about Te Waarakihi.

She said Te Waarakihi’s family, particularly his Rotorua grandmother, Mahara Alcock, led the charge in sending out hundreds of swab kits and held an event in June with the Rotorua Pacific community that encouraged locals to join the registry.

How you can help

Donors need to be aged between 18 and 35, meet the eligibility criteria to give a blood donation in New Zealand and be willing to donate bone marrow to any patient anywhere in the world.

Bone marrow donation does not involve donating bone. It involves the collection of blood stem cells which grow inside the bone and these can be collected in different ways.

Getting on the bone marrow registry was the first step and involved taking a simple swab.

More information can be found on the New Zealand Bone Marrow Donor Registry website.

Kelly Makiha is a senior journalist who has reported for the Rotorua Daily Post for more than 25 years, covering mainly police, court, human interest and social issues.