Recommended by Lifting weights and the hopes of families battling rare illness

 Temira Hetherington and Tai Mataroa with daughter Paris were in Hamilton to support the power-lifting event at Waikato University in support of families with children diagnosed with mitochondrial disease.

Temira Hetherington and Tai Mataroa with daughter Paris were in Hamilton to support the power-lifting event at Waikato University in support of families with children diagnosed with mitochondrial disease.

Losing two young children to a mystery disease that has no cure is Temira Hetherington and Tai Mataroa's reality.

In 2009, the couple's daughter Rio died at just 22 months. In 2014, son Taison died at age three. 

Both children are suspected to have died from a mitochondrial disease - their symptoms and the results of muscle biopsies revealed problems with the mitochondria.

 Firefighter John Parker helped organise the event as part of the Million Dollars for Mito effort, set up after his son died of mitochondrial disease in 2015.

Firefighter John Parker helped organise the event as part of the Million Dollars for Mito effort, set up after his son died of mitochondrial disease in 2015.

Hetherington and Mataroa have both had blood tests, but no abnormalities were revealed. Doctors suspect they both have a mutated gene being passed down.

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"We didn't actually get a diagnosis until we had our son - he was one when our daughter was diagnosed," said Hetherington, who was in Hamilton to help support a fundraiser for mitochondrial disease.

 Fire Investigator Jess Johnson dead lifts during the event raising money for Starship Hospital's research into mitochondrial disease.

Fire Investigator Jess Johnson dead lifts during the event raising money for Starship Hospital's research into mitochondrial disease.

"Since then, we have just been trying to raise awareness of the disease."

On Saturday, the couple and their healthy teenage daughter Paris were among the crowd that turned out to cheer on power-lifters at the annual Bench Wars competition at Waikato University. 

Held for the second time this year, the power-lifting competition is part of the Million Dollars for Mito mission - an effort designed to raise money and awareness of the plight of children suffering from any of the rare but devastating ailments grouped under the mitochondrial disease label. 

 Te Awamutu couple Rebecca and John Parker with terminally ill son Maddox and daughter Willow.

Te Awamutu couple Rebecca and John Parker with terminally ill son Maddox and daughter Willow.

In the wake of his death, Parker and wife Becky have not stopped fighting for the cause, running events to chip away at their long-term $1 million target.

"With everything we went through with Maddox, we met a lot of other families who have a child with a form of mitochondrial disease," Parker said.

"Knowing the isolation they feel, there's no hope at the moment, there's no information if you get sent home with a child with mitochondrial disease, except to love them and look after them.

 Maddox Parker died a month shy of his second birthday in November 2015.

Maddox Parker died a month shy of his second birthday in November 2015.

"If we can raise money to help specialist staff to get that information and equipment for better diagnosis ... that's the driver, we want to make it easier."

So far the couple have helped raise $167,263 of their short-term target of $300,000. 

Funds have gone towards setting up a grant for families dealing with the loss of a child, funding overseas education for a specialist and employing a registrar to gather data on how many children in New Zealand have been diagnosed with mitochondrial disease since 2000. 

"That is making a huge difference in painting a picture on how prevalent this disease is."

Along the way, they met Hetherington and Mataroa, who ran their own fundraiser in Auckland, raising $13,000 last year.

DNA material from both of their children continues to be tested by researchers at Auckland University and in a UK laboratory. 

"There's no cure, there're no treatments. Our main focus is raising awareness," Hetherington said. 

Twenty one lifters took part on Saturday, with Tommy Taylor taking the men's lift with a bench press of 175kg and dead lift of 257.5kg.

The top women's spot went to Kate Nicholson who, weighing in at 51kg, bench pressed 52kg and lifted 110kg, and Jojo Walsh, who dead lifted 130kg.

More information about the Everyday Hero fund can be found here: https://millionformito.everydayhero.com/nz/for-maddox-and-our-mitochondrial-children

 - Stuff