Nightmare
Couple who lost two children to a mystery disease await OK from researchers before they try for another baby, reports Lee Umbers.
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 south Auckland family’s genetic secrets.
Today marks the beginning of Mitochondrial Disease Awareness Week which helps spread the word about the debilitating disease suspected of taking the lives of Rio Mataroa at just 22 months and younger brother Taison at 3.
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,’’ Temira says.
‘‘We thought we were going to go to the hospital, they were going to give us some type of [baby] formula and she would be fine.’’
Instead, Temira says, while at the hospital Rio stopped breathing and started convulsing. ‘‘They ... did heaps of different tests. They were pretty much dumbfounded.’’
Rio was taken to Starship Children’s Hospital where the couple was told there was something gravely wrong with their baby daughter’s health ‘‘and she may only live for another few weeks’’.
Temira said she went into ‘‘shock, and then bawled my eyes out. It took ages to wrap my head around [it]’’.
As months went by Rio continued to deteriorate while medical tests remained unable to diagnose what was wrong.
The couple’s first-born, Paris, now 13 and a Counties Manukau athletics rep, 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.
At 22 months, Rio died. ‘‘Her death is the hardest thing,’’ Temira says, weeping at the memory. ‘‘I’ll never be over it.’’
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 similar characteristics to Rio. Within six months Taison 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.’’
Temira says Taison, who died in 2014 aged 3, 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.
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.
Temira and Tai have both had blood tests, which did not reveal any abnormalities, she 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 are able to unravel their family’s genetic mysteries.
DNA material from Rio and Taison is being examined at a BEVAN READ / FAIRFAX NZ 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 death.
Temira says they draw strength from their belief their family will one day be reunited.
‘‘I believe that they’re in heaven.’’
‘ If we could help another family, that would be amazing.’ TEMIRA HETHERINGTON