Mito Stories

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Our Stories

 

Melissa’s story

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. Read more.


Noah’s story

Noah is six years old and has never eaten a meal. His parents tried for four years to determine what caused their son’s symptoms before Noah was finally diagnosed with mitochondrial disease when he was five. Read more.

 

 


Ron’s story

Ron’s mito led to early retirement. Now 70, Ron has learned to balance activity with plenty of rest to manage his symptoms. Read more

 


Jorja-Rose’s story

The Meyers family had never heard of mito when their baby daughter, Jorja-Rose, was diagnosed. Read more

 


Ruby’s story

Ruby was only a few days old when she sadly passed away from mitochondrial disease. Read more


Aidan’s story

Aidan was placed on life support after his body failed to cope with a common cold. After two long years, and symptoms of developmental delay and ‘floppiness’, he was finally diagnosed with mitochondrial disease. Read more

 


 

Miranda’s story

Miranda failed to thrive and suffered from seizures and poor vision. She then underwent four years of testing to determine what caused her symptoms. Read more

 

 


10997381_10152994884036075_2997372566261878240_oChloe’s story

After three year old Chloe’s GP noticed a heart murmur, she was referred to a paediatric cardiologist for an echogram. Read more

 

 


Luca’s Story

At just 17 days old, Luca’s mum noticed that something wasn’t right.  Luca spent the next ten months in and out of hospital, undergoing innumerable tests before doctors finally suspected mitochondrial disease. Read more

 


Lachlan-and-Riley-resizeMy Little Heroes: Lachlan and Riley

It was a day just like any other, yet this day will stay with me forever!  It was Wednesday 23 March, 2011…Read more

 


John GoodwinJohn’s Story

My name is John Goodwin and I was born in Goulburn in October, 1951.  I have a type of mito called Leber’s Heriditary Optic Neuropathy (LHON), which caused me to go blind at the age of 47. Read more

 


Kara’s Story

Can you imagine knowing that your child was sick and not being taken seriously?

Imagine waking up to the sound of your eight year old daughter vomiting uncontrollably while semi-conscious. This is what happened to Dr Karen Crawley in 2007. Little did she know that her family’s nightmare was only just beginning.Read more

 


Pam’s Story

I became involved with the AMDF as my 19 year old daughter died from MELAS, one of the mitochondrial diseases. I have the same condition and, just last year, my mother died from the same condition. Read more

 


Sarah’s Story

I’m Sarah. I’m 39 and I live in Adelaide with my husband and two children. I was diagnosed with mitochondrial myopathy a little over 10 years ago. Since then I’ve had times when it was hard to walk 100 metres and times when I’ve been able to swim 400 metres. Read more

 

 


The Beard Family’s Story

Life seemed pretty normal for the Beard family with the usual ups and downs. At the beginning of 1997 Don was working as a Senior Human Resources Manager at a utilities company, Rely owned and operated her own retail business, Toby was enjoying high school, and Pippa appeared to be a healthy, happy 19 year old, studying hard at university and working two part-time jobs. In May 1997 everything changed. Read more

 


 

ariAri’s Story

Everything changed for our family on the 1 February 2014 two days after our beautiful boy Ari’s fourth birthday. I couldn’t have known this at the time but on this day my son and I shared our last words with each other. Read more

 


 

taylahTaylah’s Story

Our beautiful six year old daughter, Taylah was in dance rehearsal when I noticed that the left side of her body wasn’t doing what it should have been. It reminded me of the droopy eye she had when she was two, and the trouble she was now having putting on her thongs. Read more

 

 


 

Jack’s Story

Our son Jack is almost 10 years old and his desires are the same as every other kid his age – to feel happy, be healthy and live life to the fullest. Unlike other children, Jack was diagnosed at seven months of age with a mitochondrial disorder. Read more

 


 

Will’s Story

Our son, Will was born on 3 May 2011 via caesarean, and straight away the doctors noticed he had tachypnoea or rapid breathing. They thought he probably had fluid on his lungs due to his complicated birth but tests showed this wasn’t the case. Read more

 


 

Margie’s Story

Thirty years ago our seven year old son, Alex died from what was then an unknown illness. As a mother I was shattered to find out there was no cure for Alex and yet men could walk on the moon. Where were peoples’ priorities? Read more

 


 

Gaby’s Story

Gaby is our fourth child. There were subtle signs during pregnancy, and again after birth that indicated that things were not going “according to the norm”, but we were not prepared for the devastating news that was to come… Read more

 

 


 

Archer’s Story

My name is Jane Cleary and this is my story:

Sadly I lost my baby Archer Banjo Cleary on the 26th April 2013 to suspected mitochondrial disease. He was just shy of turning eight months.

Archer stopped growing in-utero and was delivered last September, six weeks premature weighing in at only 1.6 kilograms. It was a proud moment for us when he hit his milestone of two kilograms and after six weeks of incubators and tube feeds (with added calories), our little boy came home from the SJOG neo-natal unit on 19 October (which was coincidentally his actual due date) a hefty 2.3 kilograms! … Read more

 


 

Dion’s Legacy

Tracy and Warren Taprell were just like any other couple expecting their second child: excited and perhaps a little more confident than the first time round when they welcomed their little girl Erin into the world a couple of years previously. They dreamt about his first day at school, about teaching him to ride a bike and what he’d want to be when he grew up.

Dion was born into a doting family and had the world at his tiny feet. When Dion reached eight months, Tracy and Warren realised that something was wrong and after many exasperating visits to various doctors and specialists, Dion was diagnosed with Leigh’s disease, a fatal type of mitochondrial disease, for which there is no cure… Read more

 


 

Rex’s Story

Our first born child Rex De Martin Philp was born 20 September 2008. We were all so excited to meet our son Rex who was born a healthy baby weighing 3,465 grams.

Not for one moment did we take for granted how blessed we were to have a healthy, handsome baby boy. As a family in general, we recognised that we were particularly lucky – no serious illness seemed to affect our immediate family.

I look back at 2009 and think how things can all change so quickly and within a space of eight weeks your world can just fall apart … Read more

 


 

Tate’s Story

In the early hours of 18 July 2009 our second child Tate, entered the world. My husband Jason and I felt complete. It was already a special day, it was Tate’s older sister Sienna’s second birthday, a very special bond they will share forever.

Tate was such a beautiful, happy baby. He had the old soul look about him and seemed so content. Around four months of age we noticed Tate wasn’t gaining a lot of weight and fussed a lot at feeding times. I didn’t really think much of it, changed his formula and that seemed to fix the problem. Read more

 


 

Jacinta’s Story

Our beautiful daughter, Jacinta, is 32 years old. From a few months of age, we realised her milestones were a little slow, but she suffered from glue ears so we thought this was the reason for the delay in sitting, crawling, walking, etc. At eleven months of age, she had a grommets operation and had to be resuscitated. This should have been the first warning of mitochondrial disorder, but, of course, we had never heard of it. Read more

 


 

Will’s and Thomas’s Story

My husband Steven and I have four special, fantastic, gorgeous, much loved children – William, Georgia, Dimity and Thomas.

Our two gorgeous girls – Georgia who is nine and Dimity who is six – are both such good fun, full of life, great at sport and love their friends and school. Read more

 


 

Tom’s Story

Our third child, Tom, is an extremely cheerful and loving twelve-year-old full of laughter and smiles, yet he has had a complicated medical history and has undergone over 35 general anaesthetics and medical procedures to keep him stable.

From birth, Tom was different than his two older siblings. He had a poor suck and swallow and little interest in feeding. Read more

 


 

Harrison’s and Noah’s Story

On 12 March 2005 our twin boys Harrison and Noah came into our lives.

I had a wonderful pregnancy, of course there where some anxieties about a twin delivery and the sleepless nights with what we thought were two future AFL players practising their kicking skills inside of me at night, but other than that it was as easy as a walk in the park. Read more

 


 

Pippa’s Story

Life was originally pretty normal for the Beard family with the usual ups and downs. Pippa appeared as a healthy happy 19 year old – working hard at uni and having two part time jobs.

One morning after enjoying a party with her boyfriend and friends, Pippa woke in severe pain, not able to walk and could literally hardly move. Read more

 


 

Judy’s Story

Judy was born in 1933. There was no indication of any medical problems then or until she was well into her adult years, although she lacked hand-eye coordination and was not physically robust. Read more

 

 


 

Peter’s Story

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

He was 34 years old when he had his first ‘strokelike episode’ in 1998 which was a great shock to us all, as he was relatively fit and healthy prior to this. Read more