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The Otonga Primary School pupil is in Starship Hospital after being diagnosed with a rare blood disease and desperately needs a bone marrow donor.
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, 9, needs a bone marrow transplant but there's not enough Māori or Pacific Island donors. Photo / Supplied
His story featured in the Rotorua Daily Post last month as his family tried to get more people to donate.
Mio and Ingle, who own Whakatāne-based engineering firm East Bay Engineering, have this week had a bunch of swabbing kits delivered and they are working to distribute them across the Eastern Bay to get as many Māori and Pacific Island people on the Bone Marrow Donor Registry as possible.
Mio has never met Te Waarakihi but he realised how serious his condition was when they got in touch with his Rotorua-based poppa, an engineer who had worked for them previously, about some work they had going.
Mio said after talking to him, he knew it was serious and he wanted to help.
East Bay Engineering owners Dinnell Mio (left) and Joel Ingle are doing their bit to get more bone marrow donors on the registry. Photo / Supplied
Mio and Ingle have launched an advertising campaign in the Eastern Bay and are shoulder-tapping as many Māori and Pacific Island people as they can through their business connections.
First on their hit list are their staff, who Mio joked would be given the hard word to help: “We will be whacking them with a stick if they don’t.”
Mio said he knew the benefits of finding the perfect match after his niece’s life was saved more than a decade ago after suffering a similar illness.
She found the perfect match on the worldwide register from a German man, proving you just never know who could be out there to help save a life.
The response
New Zealand Bone Marrow Donor Registry search co-ordinator Paulette Tasker described the response to Te Waarakihi’s call for help as “massive” with more than 500 swab kits being requested.
She said it was possible many more had started the donation process by going separately to blood banks to give blood.
She said Te Waarakihi’s nanny, Mahara Hooper from Rotorua, had done an incredible job collating names and addresses of people who wanted kits sent to them. She had personally sent kits or had put them on a mailing list she had set up with the donor registry.
She said those who had requested swab kits needed to send them back as soon as they could so they could then be sent to the United States for the next phase of the process.
She said it was possible other families impacted would also greatly benefit from having more people on the registry.
“It’s been great because it’s raised the public awareness and we really hope this young lad can benefit from it.”
Mahara Hooper said their “little man” was still in Starship Children’s Hospital after suffering a setback two weeks ago with his liver and kidneys.
She said he had hoped to go home with his mum, Sharene Hooper, a few weeks ago as they had both been in Auckland in either hospital or at Ronald McDonald House for three months since Te Waarakihi’s health deteriorated in February.
Te Waarakihi Hooper Felise, 9. Photo / Supplied
She thanked all of those who had come forward so far but also appealed for more to continue to come forward and get swabs.
“I’m happy to be contacted or people can go to the New Zealand Bone Marrow Donor Registry,” Sharene Hooper said.
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 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.
For those who want to help Te Waarakihi but are unable to donate bone marrow, the family has set up a Givealittle page to help with ongoing costs of travel between Rotorua and Auckland and other expenses while Sharene Hooper is unable to return to work.
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.
