Much-loved entertainer Pio Terei and his wife Debbie have made an emotional appeal for bone marrow donors after losing their youngest son to leukaemia.

The couple this week spoke of the toll 17-year-old Teina's death last August had on their family, and of their determination to honour his memory through a trust helping others.

"You know you die twice, eh," said Pio. "You die once when you leave this earth and you die again when no one mentions your name. Our boy is not going to die twice - never."
Debbie said the family was "broken" by Teina's death.

"Our lives will never be the same. We are like zombies walking around - the pain is horrendous.

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"Some days it's too hard. Any mother who has lost a child will tell you that because you get so low at times that's where you want to be - because the thought of being with your baby is that strong."

The first signs of Teina's illness emerged one morning when he complained about pressure on his chest.

After a doctor's visit, he was referred to Waitakere Hospital. Further tests revealed he had excess fluid around his heart which needed to be drained. But three months later Debbie noticed her son was "constantly tired".

"There were no visible signs anything was wrong, no weight loss, no rash, no vomiting, nothing. I knew something was wrong."

She was right. Last April 1, Teina was diagnosed with acute myeloid leukaemia.

"I had no control over what was happening - my fear was finding out what might happen," said Pio.

Teina, who wanted to follow in his father's footsteps and become an actor, was in Year 12 at St Peter's College in Auckland.

He appeared in the film Billy T: Te Movie with his dad, TV show Are we There Yet?, with his family, Last Man Standing and Shortland Street.

Pio best known for TV shows Pio! and The Life and Times of Te Tutu, said his son was a "chip off the old block" with a similar sick sense of humour.

"Teina had an old head like a kaumatua, he touched a lot of people."

His first television appearance was in a Tegel chicken commercial. On set the 3-year-old would take control of the whole crew.

"He got to the point he would say, 'CUT'. The director had to remind Teina, 'That's not your job'," said Pio laughing.

"When I hear these stories it sucks because it reminds you what you have lost," he added tearfully.

Teina Terei passed away last year. Photo / Supplied
Teina Terei passed away last year. Photo / Supplied

Debbie said her "kind, caring" son crammed "40 years in a 17-year-old's life". He had plenty more planned. He had landed his first job, saved enough for overseas holidays, bought a new 4WD, had a girlfriend, a dog and saved enough money to buy a house.

Throughout his illness, Teina was "stoic and tenacious," Debbie said.

He stayed at Auckland's Starship children's hospital for seven months, his mother rarely leaving his bedside.

"There was no time or tolerance for negative thoughts or visitors," said Debbie.

"I had to suppress my feelings. There was no crying around baby."

Despite her positive outlook, there were times Debbie felt despondent, particularly when Teina was being treated with chemotherapy.

"Chemo kills everything. Your hair falls out, your skin peels off, you vomit, you get diarrhoea, it is the most hideous thing. Teina could recognise when his temperature rose and would say, 'Here it comes mum'. Then he would shake, shake and shake. One night it got so bad I spooned behind him to hold him to hold his jaw shut because he was shaking so much,:" she sobbed.

Pio said he felt "totally robbed" by his son's death.

"I am not scared of death now, I am not scared of anybody or anything because I have already been smacked. I would rather take on the Mob in a pub in South Auckland than go through what we've been through."

The couple spoke to the Herald on Sunday at their spacious family house in west Auckland.

The interview took place in the kitchen. It's still too painful for them to sit in the lounge. That was Teina's space where he'd lie on the couch soaking up the late afternoon sun with his older brothers Jack and Dalton.

Pio said the house feels empty now. Teina's brothers are living at home but "angry their baby brother has been taken from them," said Debbie.

"You have to learn to live in this new dark place because you don't come out of it. You are stuck here and as a mum I can't fix this."

It's a sad irony for the entertainer, who hosts The Parenting Show with Pio.

"The hardest thing for me was to work," he said. "My work revolves around, 'How full is my emotional tank?' I had to talk to some prisoners and I could see the pain they were carrying so I told them about the pain I was carrying - it put some of their problems into perspective.

"Most funny people are serious people but I take my boy with me and I take his humour with me. But I can't put his picture up yet, it's just too hard."

Flight attendant Debbie is back at work with Virgin Airlines, doing day trips to Australia and the Pacific.

Last week she flew much further, to Seattle where today she will support a group of Kiwis who are attempting to climb the 286-metre Columbia Center wearing heavy firefighting clothing and equipment to raise money for a leukaemia charity.

Pio Terei and Teina at Billy T James movie premiere. Photo / Christine Cornege
Pio Terei and Teina at Billy T James movie premiere. Photo / Christine Cornege

Bone marrow transplants are one of the main weapons in the fight against leukaemia, which kills 346 Kiwis a year. There is a long waiting list, but there must be a match between donor and recipient. Teina became too ill before he could undergo a transplant.

Pio said he was freaked out when Teina told him he wasn't scared of dying.

"He said, 'I'm not afraid to die. I've done so much in my 17 years and what I haven't done doesn't matter. I just worry what this will do to you.'."

Bonded in life and death Teina will always be close to his mother's heart. Debbie has the phrase "Ko au ko koe ko koe ko au" (I am you, you are me) tattooed on her chest.

"Teina and I are one - we will never be apart. No one can ever take that away from me."

500 donors needed

Only 28 New Zealanders were able to donate bone marrow in the last three full calendar years, says the New Zealand Bone Marrow Donor Registry.

The organisation needs to sign up 500 men willing to be donors every year. Pio and Debbie Terie are close to finalising Trust Teina, which they hope will encourage others to donate - particularly Maori and Pacific Islanders.

Professor Pou Temara from Waikato University, an expert in Te Reo and tikanga (culture), said Maori and Pacific people are reluctant to donate body parts.

"It's entrenched in their culture that body parts are tapu (sacred) to that person and tapu to anyone else.

"The culture has to change, which is accepting bone marrow transplants and parts of others for our own survival".

Pio added: "I think there is a lot of fear - some of our 6 foot 4 strapping men are scared of needles but we need to evolve to survive as a race."

Said Debbie: "If you can give bone marrow to your own child then why can't you donate it to someone else if there's a match? You are saving someone's life. I can't think of anything more rewarding than being able to give something of me to somebody else."

For more infomation and details on how to donate.