Team ArcherThis weekend we received the below email from Jane Clearly who lost her baby, Archer, to mitochondrial disease, and we are so moved by Jane’s story, that we have posted the email below and ask everyone to read it and help Jane to raise as much money as possible for this extremely worthy cause.
“I was wondering whether you may be interested in helping me raise both awareness and money – to help the many other Australian families out there battling with this debilitating disease.
I am forming Team Archer to walk in the Perth City to Surf on 25th August.  We will be donning green Team Archer – Team Mito teeshirts and walking en-masse to raise awareness (primarily) and money for much needed research.
The reality is that 1 in 200 of us carry the mutant gene that can lead to disease.  One child every 30 minutes is born who will develop a mito problem that can lead to disease by the time they are 10 years old. 
The World Health Organisation say that by 2040, more children will die as a result of mitochondrial disease than from childhood cancers.  Makes you stop and think!  You may even find that in your circle of friends (or friends of friends) you may know of someone who is struggling with a form of mitochondrial disease.
Sadly technology has not yet caught up to our special mito children.  Lack of funding means lengthy testing times (sometimes 6-12 months or longer to receive a diagnosis) and high testing costs in Australia.  At the moment there is no government funding which is why I am trying to raise money for the Australian Mitochondrial Disease Foundation.
In our case, our son possibly had such a rare type of mitochondrial disease (only 6 other recorded cases in the world), therefore his biopsy samples have been sent to the Netherlands, to the world leading researcher – and we have been told not to expect any answers for at least 12 months.  I have since spoken to mothers who are still waiting for a diagnosis (3 years down the track).  Our children are dying before our specialists have a diagnosis.  It is 2013 in Australia – this should not be happening!
I have set up a fundraising page for Team Archer
I was wondering whether you may consider putting this on your facebook feed – to help me raise as much money as I can
I know I have previously told you a little about Archer’s story, but here is a link to the full story  It is quite sad, but I hope that by sharing my experience it may help other families in the future, and make your readers aware that such a horrible condition exists that is causing so much suffering in our community and that we need their help – at the moment there is no cure.
Thank you for your time
Kind regards
Jane Cleary”