When Temira Hetherington and Tai Mataroa launch balloons to the heavens next week it will be a touching tribute to the baby son and daughter cruelly snatched from them by a mystery disease.
It will also mark another milestone in the couple's years of limbo as researchers on both sides of the world try to unlock the young Auckland family's genetic secrets.
Sunday is the beginning of Mitochondrial Disease Awareness Week. It is the debilitating, often life-limiting and difficult-to-treat disease suspected of taking the lives of Rio Mataroa at just 22 months and younger brother Taison at 3.
Mitochondria are the powerhouses of the body's cells, fuelling energy needed to perform basic functions like breathing, talking, walking and moving. Mitochondrial diseases are caused when the mitochondria are faulty. It is estimated every 20 minutes a child is born who will develop a form of the disease by age 16. But for the majority of affected patients there is no cure.
Temira, 32, remembers "the day that our lives changed" when she took three-month- old Rio to Middlemore Hospital in 2008.
She and Tai, 34, had noticed Rio, a healthy 4.3kg at birth, wasn't gaining weight
"She was really hungry and we'd feed her but she would spew it back up. We also noticed that she was quite strong, she could hold her head up quite early, and she would arch, and gag, and vomit a lot," Temira says.
"We thought we were going to go to the hospital, they were going to give us some type of (baby food) formula and she would be fine."
Instead, Temira says, while at the hospital Rio stopped breathing and started convulsing.
"They ran her into Resus (and) did heaps of different tests like a lumbar puncture, CT, bloods, everything they were pretty much dumbfounded."
Rio was taken to Starship Children's Hospital by ambulance for further tests including an MRI.
Temira says she and Tai were told there was something gravely wrong with their baby daughter's health "and she may only live for another few weeks".
She says she went into "shock, and then bawled my eyes out. It took ages to wrap my head around [it]".
Over the next two-to-three weeks Rio was fitted with a nasal-gastric tube which allowed her to be fed and in turn sleep properly, Temira says. But her condition further worsened. "She couldn't handle much food in her stomach and so she would vomit and gag; and her swallow wasn't very good. She was aspirating into her lungs so then she (was) at risk for chest infections."
Temira says she asked to take her baby home, and was provided with feeding and suction machines and the help of a team of visiting nurses.
Rio continued to deteriorate. As months went by she became unable to control her body temperature, sit up or hold her head up, and needed 24-hour oxygen support and her airways regularly suctioned.
The little girl couldn't talk or even cry, but Temira says Rio communicated with her through her eyes.
"She had really knowing eyes. You could tell that she just wanted me to hold her all the time." Rio loved her to sing to her, Temira says, and rubbed her feet together with joy.
Temira says she could also see her brave baby fight "every day" to stay alive. "It (was) really hard because you feel really helpless."
Medical tests were unable to diagnose Rio's condition. It was thought it may have been a neurological disorder, Temira says.
The couple's first-born Paris, now 13 and a Counties Manukau athletics representative, hadn't had any medical issues. And Temira, a former Counties Manukau netball rep, and ex-rugby league player Tai, were both fit and healthy.
"I think that was one of the hardest things," Temira says. "Because, back then we were like, ok, Rio's sick so how do we fix it? We still hadn't fully wrapped our head around that there was nothing we could do."
At 22 months, Rio lost the battle for her life.
"Her death is the hardest thing," Temira says, weeping at the memory. "I'll never be over it."
Casts were taken of Rio's tiny hands and feet, which adorn the lounge wall of the family's Manurewa home. "We had her cremated, so she's at home with us," Temira says. "Because we didn't want to put her by herself."
The family was given grief counselling and staff from Starship and Rio's home-care nursing team attended her funeral and spoke at the service. Temira says she will always be grateful for the care and compassion the doctors and nurses showed throughout.
A year after Rio's death, Temira fell pregnant again. She says she and Tai had been told there was probably only a 1 to 2 per cent chance of another child having the same condition as Rio.
But within a fortnight of Taison's birth in 2011, they noticed their baby boy displaying characteristics Rio had, Temira says.
Within six months Taison was suffering the same range of ailments and was under intensive medical care.
"I was just like, oh my God, I can't believe we're going to be going through this again," Temira says. "At first I was feeling sorry for myself, and then I was like, this isn't happening to you, it's happening to him. So we're going to give him the best that we can while he's here. He doesn't have a very long time, so you just need to be there for him."
Temira says Taison brought her incredible joy.
"I was very protective of him from the very beginning because of Rio, but he honestly healed me from Rio. He healed my heart," she says. Taison endured the same symptoms as Rio, with a slight delay in their onset.
By the time he was approaching his third birthday he had been "really struggling" for a long time. "On Mother's Day 2014, we ended up in hospital, and they said that he was probably only going to live for another week or so," Temira says.
Family surrounded his hospital bed, his music therapist came in and they sang to him. Taison's condition stabilised, however, and he was taken home where he was able to spend another four months.
Temira still vividly recalls the day Taison passed away.
"They tell you that they're going to die, and you can try and mentally prepare yourself for it but you're never actually ready."
Temira rang the ambulance after Taison's breathing slowed markedly and Tai began CPR to try to save their precious boy.
But after emergency services arrived they found his heart had stopped beating, Temira says. "So I just started singing to him and then he took a breath, and they said, 'He's doing this on his own.' And so, he would probably have a breath or two every minute, and he stayed alive for another three hours. It gave the opportunity for everyone to leave and me and Tai just to have a big cuddle with him, singing.
And his nurse had turned up and his sister was playing the guitar, and then Tai had a big hold, and then he gave him back to me, and he took one breath, and then he just passed away. I just feel very grateful that we were all there for him."
Doctors have still not been able to definitively diagnose either Rio or Taison's conditions, but it was thought both were victims of Mitochondrial disease, Temira says. Their symptoms and the results of muscle biopsies which revealed probable problems with the mitochondria led to the conclusion.
Temira and Tai have both had blood tests, which did not reveal any abnormalities, Temira says. "But they think we both have a mutated gene that we're passing down, they just don't know which one it is."
The couple have decided not to have any more children until researchers were able to unravel their family's genetic mysteries.
DNA material from Rio and Taison is being examined at a research level at Auckland University and in a study at a United Kingdom laboratory. Both projects are looking into Mitochondrial disease.
Temira hopes a breakthrough will allow her and Tai to find some closure and move forward, and "if we could help another family, that would be amazing".
The couple have been helping other Kiwi families cope with the condition, by fundraising for Starship Foundation's Million for Mito campaign – aiming to bring in $1 million for research, awareness and support.
Next week, the family will launch balloons with handwritten messages to the skies to mark the two-year anniversary of Taison's passing. Temira says they draw strength from their belief their family will one day be reunited.
"I believe that they're in heaven."
- Sunday Star Times