Marulan Soccer Club will be holding a fundraiser this Saturday, August 19 at the Marulan Soccer Fields. The aim of the4 day is is to raise much needed funds and awareness for Mitochondrial Disease.
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The first game will be at 8.30am and the main game, the all age men (AAM) at 3pm.
We will be wearing red socks, which are available for purchase at training on Thursday night and on Saturday for $10 a pair.
There will be raffles sold throughout the day and a few items to be auctioned at the end of the day.
We will also have a link for a fundraising page set up for "The Bloody Long Walk" which is being held on October 15, with a team led by Archie Armitt’s dad Shaun, who will take part for the second year running, so all proceeds will go towards supporting them and this charity.
Archie Jake Armitt was born in Goulburn on December 16, 2006 to Amanda Lovell and Shaun Armitt. First grandson for Vicki and Wal and first grandchild for Emily and Barry.
He appeared to be healthy and was certainly a bright happy little baby as he continued to grow.
As he progressed in life it was obvious that Archie had problems with muscle strength, reaction to sunlight and problems with eating to name a few concerns, but specialists were unable to come up with a correct diagnosis.
He continued to lose weight and often became quite ill. After an admission to hospital Archie was diagnosed with adrenal insufficiency (Addison's Disease) for which he had to take cortisone tablets three times a day and often more to cope with everyday tresses on his body.
Despite his ill health Archie enjoyed a full and varied life with trips to a variety of zoos and nature parks, SeaWorld and Movie World, many trips to the movies, family holidays and numerous stays with his grandparents.
Archie was a much loved little boy with his gentle ways, great manners and endearing personality who enjoyed the company of young and old alike.
He lived between Canberra with his Mum, Nathan, Emmy and Mia and Goulburn with his Dad and Kelly. He attended Latham Primary school where he was popular with both teachers and students.
Archie's health continued to be of great concern and despite Shaun and Amanda's persistence that all was not well specialists failed to give a correct diagnosis.
Nearly six weeks before Archie died he had a serious collapse and was rushed to Canberra Hospital and from there flown to Sydney Children's Hospital where he was admitted to intensive care.
Things looked grim and a suggestion of Mitochondrial Disease was noted. After several tests it was confirmed that Archie had a severe form of this disease for which there is no cure and the prognosis was not good. This was devastating news. This dreadful disease was already taking a terrible toll on Archie's body.
He was surrounded by his family and to the end Archie had a smile for all especially his sisters Emmy and Mia and his brand new brother Axl.
It was an almost unbearable loss when Archie succumbed to Mitochondrial Disease on September 5, 2015 at the age of 8. His memory lives on in Archie's Angels who participate in 'The Bloody Long Walk' in Canberra each year to raise funds to promote awareness and find a cure for this disease.
It's estimated that one in 4000 children will develop a Mitochondrial Disease by age 10. That's one child born every 30 minutes who will have Mitochondrial Disease.
Mitochondria are present in nearly every cell in our bodies. They are responsible for producing over 90 per cent of the energy needed to sustain life. Mitochondrial Diseases result from the failure of these tiny "powerhouses." When the mitochondria fail, less and less energy is generated and cells stop performing and start to die. As this process repeats itself throughout the body whole systems begin to fail and the life of the person in whom this is happening is severely compromised and ultimately leads to death.
Mitochondrial Disease can be very difficult to diagnose because symptoms can arise in almost any part of the body. Often the first indicators are problems with organs that need a lot of energy like the brain, heart, muscles and stomach but any organ can be involved. Generally if three or more organ systems are involved Mitochondrial Disease should be considered.
You can not catch Mitochondrial Disease--you are born with it. Mitochondrial Disease is a genetic condition, which means it's caused by an error in your DNA. This error prevents a vital gene from doing' the job it needs to do. The error may have arisen for the first time in the affected person or it might have be passed down through the family. One in 200 people are born with genetic changes that can result in Mitochondrial Disease.
Mitochondrial Disease can affect anyone at any age, but for young children with the disease it can be debilitating and their lives can be cut tragically short as Mitochondrial Disease is often progressive. Many do not survive to see their teenage years.
There are still no effective, proven treatments for Mitochondrial Disease and no cure. Yet.
Research shows that faulty mitochondria are linked to a number of other conditions such as Cancer, Diabetes, Parkinson's, Alzheimer's, Autism, Epilepsy, Multiple Schlerosis, Lou Gherig's disease, ALS and could also be an explanation for Sudden Infant Death Syndrome.
Figuring out how to cure Mitochondrial Disease will have implications that go far beyond it.
