Mito Stories

Shelley had never heard of mitochondrial disease until 3 years ago - when her mother experienced a rapid decline in health.

In May 1997 everything changed for the Beard family when their daughter, Pippa, woke up in severe pain, unable to move.

Alana smiling

Alana was now nearly 18months old and this was the first time her family had ever heard the term mitochondrial disease.

Kara

Kara’s mother thought that Kara had a bad case of gastro – she never imagined it would be her daughter’s first MELAS stroke.

Levi was diagnosed with mitochondrial disease shortly after his 2nd birthday due to a complex IV deficiency.

At 14 months, Tyler was diagnosed with Leigh Syndrome, a form of mito. Despite this, he was a fighter who did extraordinary things.

Ziya has a rare form of mito known as ‘KARS gene mutation’ and is only 1 of 11 children in the world diagnosed with the mutation.

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Rex was 8 months old when he was diagnosed with Leigh Syndrome. Rex is unable to walk and talk and requires ongoing assistance.

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Carrera’s parents first noticed her seizures in October 2017. After numerous visits to doctors, Carrera was diagnosed with mito.

Steph_web

Steph was 10 weeks old when she first showed signs of mitochondrial disease. Her parents were relieved to finally have a diagnosis last year but were equally devastated.

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Melinda was 20 when her my left eyelid started to droop. This was her first symptom of mitochondrial disease, but it took 17 years for her to receive a diagnosis.

Tom-Dow

Tom was four when he began to have trouble walking. While Tom was diagnosed with Leigh syndrome, he hasn’t let the disease hold him back.

rebecca

Rebecca was working towards her dream job as a hairdresser when she began experiencing chronic stomach pain. It took multiple doctors and tests before she was diagnosed with mito.

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Darren was fit and healthy when he began struggling to get in and out of a chair. Just one month later, Darren fell into a coma.

alice

Alice was in her early 20s when she experienced pain and fatigue. When the pain didn’t subside, she underwent many tests before receiving a diagnosis of mito.

melissa

Melissa began suffering from fatigue and was unable to keep up with her work. After years of uncertainty, she received a diagnosis of mitochondrial disease.

Noah-New

Noah was born at just 29 weeks. At a young age, Noah began to suffer from symptoms, including failing to thrive and stroke-like episodes.

Ron

In 2005, Ron passed out at work a number of times. There didn’t seem to be any obvious reason as he was pretty healthy at the time.

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Jorja-Rose was born at 32 weeks. Over the first few months of her life, Jorja seemed ‘floppy’, and struggled to keep her head up.

ruby

Ruby was only a few days old when she began to suffer from ongoing seizures. She sadly passed away from mitochondrial disease complex IV.

aidan

Aidan was placed on life support after his body failed to cope with a common cold. After two years, of symptoms, he was diagnosed with mito.

Ari Rotolone

Everything changed for Ari’s family two days after his fourth birthday. Ari was particularly tired, and had been recovering slowly from tonsillitis.

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Margie’s son, Alex passed from what was then an unknown illness. Years later, her daughter, Rose, began suffering seizures.

Tom

Tom is full of laughter and smiles, yet he has had a complicated medical history and has undergone over 35 medical procedures.

Sarah2

After years of declining energy levels, Sarah was diagnosed with mitochondrial myopathy. Sarah was glad to have a diagnosis.

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Tate was four months old when his parents noticed he wasn’t gaining a lot of weight and fussed a lot at feeding times.

Luca-Edwards

Luca spent the first ten months of his life in and out of hospital, undergoing innumerable tests before doctors finally suspected mito.

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Miranda failed to thrive and suffered from seizures and poor vision. It took four years to determine what caused her symptoms.

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Lachlan and Riley were numbers six and seven in Australian to be diagnosed with Fumerase Deficiency, a rare type of mito.

Taylah

It took four years for Taylah’s family to receive her diagnosis of Leigh syndrome. Taylah suffers from dystonia, speech difficulties, and low energy.

Noah-and-Harrison

Noah and Harrison have the mitochondrial ATPase6, T8993G mutation. Noah presents clinically with Leigh disease, where T8993G is considered the cause in 10-20% of cases.

John has LHON which caused him to go blind at the age of 47. His family have a history of LHON.

After Chloe’s GP noticed a heart murmur, she was referred to a paediatric cardiologist. She was then quickly admitted to hospital.

Pam’s daughter sadly passed away from MELAS, a type of mito at 19. Pam, and other family members, also suffer from MELAS.

Jack was diagnosed with a mitochondrial disorder at seven months. He experienced low muscle tone, muscle weakness, and fatigue.

When Will was born, doctors noticed he had tachypnoea or rapid breathing. He also had trouble feeding and struggled to gain weight.

Margie’s son, Alex passed from what was then an unknown illness. Years later, her daughter, Rose, began suffering seizures.

Gaby’s mother noticed subtle signs during pregnancy, and after birth that indicated that things were not going “according to the norm”.

Archer struggled to put on weight, and suffered from health complications. Sadly, Archer passed away from mito just shy of eight months old.

When Dion reached eight months his parents realised that something was wrong. After many visits to doctors and specialists, Dion was diagnosed with Leigh syndrome.

Jacinta was slow to reach her milestones. At eleven months, she had an operation and had to be resuscitated.

Steven and Penny have four children. While their daughters are in good health, both William and Thomas suffer from Leigh syndrome, a form of mito.

Although she lacked hand-eye coordination and was not physically robust, there was no indication of medical problems for Judy until she was an adult.

Peter was one of five siblings, all of whom have been diagnosed as having MELAS – a form of mitochondrial disease.

Some mito stories are still making their way over from the old website, check back in a few weeks for more stories of mito champions!