Boy’s desperate plea for Māori and Pasifika marrow donors
Full donor match is 9yo’s sole hope of recovery in a race against time
Te Waarakihi Hooper Felise from Rotorua was a fit, cheeky and happy little boy enjoying life like any other 9-year-old.
But at the start of February this year, he slowly started getting tired.
His mum, Sharene Hooper, noticed he’d get out of breath and hold his chest if they went for a walk.
Then the nose bleeds started and a puzzling cut on his leg didn’t stop bleeding.
On February 18, his symptoms worsened. He was vomiting and random dots appeared on his body.
His family took him to Rotorua Hospital’s emergency department and that night he was flown by rescue helicopter to Starship children’s hospital.
Te Waarakihi was diagnosed with aplastic anaemia, a condition which means his bone marrow has stopped producing red blood cells (cells that carry oxygen around the body), white blood cells (infectionfighting cells) and platelet blood cells (clogging cells).
He has been at the Auckland hospital or Ronald McDonald House for nine weeks since.
The only way he will get better is if he has a bone marrow transplant.
But in a devastating blow, there have been no fully matched bone marrow donors found on the global Bone Marrow Donor Registry.
Given he is of Māori and Pacific Island descent, the donor pool is smaller — reducing the chances of a match further.
Now his family are in a race against time to save Te Waarakihi’s life by encouraging as many Māori and Pacific Island people to donate as quickly as possible.
The family’s anguish
Hooper said it was hard watching her son suffer.
“You just want to take it all away and give it to yourself but you can’t. You have no choice but to deal with it.”
She spends the days entertaining her son and he does school work through Northern Health School when he’s up to it.
His best friend from Otonga Primary School, Ryan, keeps him entertained when he can with Skype conversations.
Te Waarakihi is undergoing special treatment called immunosuppressive therapy, a three-month process that, in essence, largely kills off his immune system to help his bone marrow.
Hooper said the treatment was only 70 per cent effective and it had only been five weeks since Te Waarakihi started it.
“It’s too soon to tell if it’s working.”
He had been looking forward to going home to Rotorua last week but on Friday blood tests revealed a problem with his kidneys and liver so he was readmitted to Starship.
Hooper said it was likely they would be there a while as they waited for news of a donor.
“If they can’t help my son, we are hoping they might able to save other kids,” she said.
A race against the clock
As each day ticked by, Te Waarakihi’s mother hoped for a miracle.
The 28-year-old has left her job as a skin specialist as the future remained uncertain regarding how long they would need to be in
Auckland. Even if they could return to Rotorua, she said doctors had told her it was unlikely Te Waarakihi could return to school this year given his immune system was so low.
She urged anyone reading her son’s story to offer to go on the Bone Marrow Donor Registry.
“There is a little boy here who needs your help.”
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.
"You just want to take it all away and give it to yourself but you can’t. You have no choice but to deal with it."
Mum Sharene Hooper