Nemaline Myopathy Support Group


Australian Nemaliners

Western Australia

Lauren Quinn (b: February 2002)

Lauren   Lauren
Lauren and her sister Stella Lillian


Ryan and Shaun Deyton

Sandra Dayton with her boys Ryan(left) and Shaun(right) Brent


Zania (Zarn) Ballentine

ZaniaAt the age of 6 months I apparently tried my hardest to walk, but to no avail, so decided that I was not going to crawl either (my stubborness appearing at a young age). I did not crawl, I did not walk until, one day, deciding to take on the big challenge, I eyed up the beautiful brown 70's couch in my parents living room, made a bee-line for it and went. Yep, at the age of 12 months I just got up and walked. What a show-off! That was when my mum realised there was something different about me. It was not until I was 8 years of age and had moved from my home town in New Zealand to Brisbane, Australia, that I was to undergo a biopsy and "branded" an NMer! At a young age I developed my pyro addiction followed by my need to climb anything and everything in site. I remember one time, my mum told me, she was sunbathing in front of the garage when suddenly she looked up and staring down at her were my beedy little eyes……"look mum I climbed the ladder". Well, this ladder was fantastic. It took me to new heights, really high heights - 9ft to be exact. And here I was so proudly leaning over the roof of the garage peering down at mum. Well, you can imagine how she felt. But at that age (6), I was developing an intense curiosity to try everything.
This has carried through to the present day. Much to some peoples dislike (ha ha). I have tried go-karting (my favourite). I have tried snorkeling (also my favourite). I have almost tried tandem sky-diving. But due to a queue, gave up. In my childhood there was not a tree in sight I did not climb. Much to the surprise of me never falling out. These days I leave the trees to themselves, thanks to a greater responsibility that comes with age (sadly).
Probably my biggest adventure is the one I am on now. I decided 12 months ago, that I was moving to England. Yes, I had a slight incentive (my man), but I knew noone. I had never left my home country before and for the first time was going to have to be very independent. And for anyone who knows me, I am a people person, don't much like my own company. I was going to a place where I knew I would discover news things, new surroundings, new people and a new me. For this challenge is the greatest defeat of my life and I am glad I am still on it. For me I still have reservations of trying some things physical. The funny thing is, I am more scared of meeting new people and being stared at yet again. Or having those curious questions come at me, than I am of donning a parachute and jumping out of an aeroplane.
One of my goals now is to see Canada. Well, the west coast anyway. I want to hike and camp and discover some of the most beautiful country in the world and utilise my latest passion….photography. Until then, I am on my way to Norway at the end of this year to snorkel with killer whales……my ultimate dream!!!
Wish me luck!!!

Zarn is currently living in England.

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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