Mito Warrior the awesome Kayne!

“Life isn’t about the number of breaths you take but the moments that take your breath away”

Kayne "our cheeky little leprechaun" was born March 2009 - he is our 3rd child. At 10 weeks old Kayne had his first seizure. Soon after he was diagnosed with a complex rare seizure disorder that doesn’t respond to anticonvulsant medication. Kayne had frequent hospital admissions and more medical problems kept arising (outside what was expected from this initial condition)

At age 3 yrs in 2012 we tested for Mitochondrial disease - it came back positive. Our hearts sank as we knew there was no cure, no effective treatment and that we were destined to stand by feeling helpless and watch as this disease have it's effect on our son.

Kayne has a progressive degenerative form on Mitochondrial disease – multiple different areas of his body have been effected from causing him to go blind, to bowel, muscle, brain & lung issues and more recently damage to his heart. ‘A baby in a growing boy’s body’ is the best way to describe Kayne’s development.

The most precious gift Kayne has given us is his smile, a cheeky grin that he willingly shares. Kayne was 4 yrs old when he gave us his first smile. It was a small piece of happiness that brought joy to our heavy hearts. We’ve learnt that sometimes it the simplest things that make the biggest difference, and can bring the most inner happiness.

SMILE – See Miracles In Life Everyday. Thank you Kayne for continuing to give the world so many smiles.

Heather was your typical out going 22-year-old young lady

Heather was your typical out going 22-year-old young lady.  She was living life as a veterinarian nurse before she decided to embark on her big OE.  While abroad Heather fell ill. Because medical care in Europe was so expensive, she decided to return home.  As time went on Heather’s health deteriorated. People at work would say your hearing is bad and that she would notice her vision would play up.  She began to notice the weight just falling off her.  Heather went to doctors and had blood tests and still there was no idea why she was getting sicker and thinner.  By this time Heather had to give up her dream of been a vet doctor and stop studying and even working as she became to sick.  Eventually her doctor told her that she has an eating disorder and possibly mental health issues. Heather began to think she did.  But still knew something was wrong.  She was then admitted into an eating disorder clinic in Greenlane. While in the clinic she got sicker and sicker by the day.  She had all the blood tests you could get, and nothing really stuck out to the obvious eye. At this point Heather choose to discharge herself as she knew it was not an eating disorder, she had she was sick and had no clue why.  Finally, a new doctor picked up something odd in one of her blood tests. He then went on to ask her if she could get herself back up off the ground without using her hands.  And unfortunately, she couldn’t.  From this the doctor then went to get more investigations.  Heather had neurological test, muscle disease tests, muscle biopsy test and nerve studies done.  She recalls it was not long after the Christchurch earthquake when she was told the news that she had Mito Disease. Finally, Heather had an answer for why she was sick and getting worse over the four-year period.  Heather said, “it was relief but also emotional time learning of her disease”. 

Since the diagnosis Heather has gone on to have four Mito Strokes, the last one landed her in hospital for the longest stay of them all.  Three months in hospital followed by teaching herself to walk, talk and eat again on her own.  Finally, after that three months she was told she can go but had to be in alternative care.  Which meant she was not going home but to another facility where she still needed help.  Unfortunately for Heather she had no money to pay for this and was given funding for only part of her stay.  Her dad had to find the money to pay for the rest.  In this time Heather was removed of the sickness benefit and had to leave her home as she had no income to pay the rent.   

heather 2.jpg



Heather has on going healthcare costs she recently had to buy hearing aids that cost $8,500.00 which has come from her inheritance money (which I not a lot) along with a car safe for her to drive.  She also requires a breathing machine to sleep at night. Along with having to take Cq10 supplements and Thiamine which is not government funded items.  Constant costs make it hard for Heather to stay living in her own home and stay as independent as long as she can.

Living With Mitochondrial Disease As An Adult

Hi, my name is Kim, and this is my story. It all started a few years ago after intensive physio for breaking my leg, at the age of 27.  Then out of nowhere my right leg and foot started getting weak. I then started experiencing pins and needles along with sharp shock symptoms. This caused me to see my local GP. After she examined me, she said something's not adding up here.  I then went on to have some intensive tests on my heart, eyes, hearing, brain, muscles and every other thing you could think of. They were still stumped. Mitochondrial disease has many other well-known conditions related closely such as ALS, Parkinson's, muscle dystrophic. My neurologist was at a loss, so invited many different specialists to come as a group and visit me. One such doctor was genetic specialist Dr Emma Glamuzina. And after consultation and skin and muscle biopsies they came to Mitochondrial disease as the answer. I'm still awaiting finalised DNA testing to give me an exact strain. This will help with family planning. I've had to drop my workload significantly to a load that I can manage, and I must set these hours myself.  I'm unable to drive a regular car and basically rely on others to assist with most things. I've lost a lot of independence. My partner works and travels overseas often so that makes it hard on me. I have neuropathies in legs, feet, eyes and ears. I have Audio processing disorder too. Ataxia, heat regulation and memory fog. Mitochondria is a degenerative disease with no treatment or cure. There is no injection, pill, or drugs that can halt symptoms either. I currently take cq10 and one other supplement for my condition which is not funded. My partner and I have applied for every rotary, government benefit and grant you can find. We qualify for nothing. However, I do have a mobility dog named Cooper from the Mobility Dog Trust.  Reason why I have is because “I’m young and I didn’t want a walker and I didn’t want a stick. I don’t have a wheelchair; I have a Mobility Dog. He keeps me going, he stops me having falls and he helps me when I need him”. Cooper and Kim were partnered together in April 2017 at the Mobility Dogs camp. And is trained to assist her when she falls to be a bracing system to help her back on her feet. Both ACC and winz tell us our income is far too high. One income is hard for two to live on in Auckland let alone knowing my condition will only get worse and require things like wheelchairs and more Dr visits as time goes on. Mitochondrial is unheard of for the majority of people. Most can't pronounce it but for those with or involved with it, it's called Mito. At worst its life threatening and at least it's a lifeline deterioration and most often constant additions of life limited symptoms. It's an invisible disease, to most I look picture of youth and health. But inside of me it's the opposite.

Kim is now 35. From this illness she also suffers anxiety.  She must take medication for this. Kim also finds it hard to socially fit in with others. As she finds people don’t know how to take her illness.


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

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

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.

Scientists to unlock DNA of Kiwi couple whose children died of mystery illness

Scientists to unlock DNA of Kiwi couple whose children died of mystery illness

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.