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ARCAN

I’m very excited to tell you all that I have launched a new business and no, that’s not my logo up the top.   I’m not on here to plug my business but to tell you about the major event that I’m launching it at.  I am running a themed pop up studio for special events and “FUN”raisers.  The business is called Funtography.  I was looking for the right event to launch Funtography at and asked if anyone knew of a charity holding an event that would be interested in my services.  I found the perfect fit.. The glass slipper.. The Yin to my Yang.  The fundraiser to end all fundraisers… And so the business officially hits the ground running at a special “FUN”raiser in 10 days, though the hard work has all been put into place already and the fun is about to begin.   That’s where my business spiel ends and the business of telling you about the event begins.

I met a very special little girl the other day.  A gorgeous little girl who’s smile could light up a room.  A little girl who’s eyes shine with mischief.  A little girl who loves bling.  A little girl who loves fairies.  A little girl called Georgia.  Georgia also happens to have been born with a rare chromosome disorder.   Her mum, the amazing Pat, is like so many other people who have been affected by trying circumstances in their lives.  Instead of giving up, they give out.  They give out help, friendship, support and practical assistance for people who are going through what they have already faced.

I went to meet Pat and Georgia last week and took my young friend Kirsty with me. Georgia’s eyes lit up when she saw Kirsty and although she’s 19, Georgia saw her as being closer to her age to play with.  She kept a close watch on her and I could see she wanted to approach her.  She waited until Kirsty was standing up looking at something on the computer with Pat and me, then she pounced, grabbing her by the hand and dragging her to go watch some tv with her.  (Kirsty tells me that Playschool hasn’t changed since she watched it lol)  Georgia is just adorable and won both our hearts.  It made it even more important to us to help this fantastic organisation.

Pat , along with 3 other mums, set up ARCAN which stands for Australian Rare Chromosome Awareness Network.  ARCAN helps families who have a child or family member with a rare chromosome disorder to find friendship and support in an otherwise lonely journey. In the last two years their membership has jumped 200% to 570 members. Each person is there to help one another. They are there to help other members to find local services, find therapists in their area, help them navigate government sites and help them cope with the almighty journey of raising not only a disabled child, but a child that often is a “one off” or a “one of 30 reported cases” rare chromosome disorder/abnormality.  Pat found that when Georgia was born there was no support network in Australia, specific for Australian families needs. In 2009 after meeting some amazing mums online,  ARCAN was born and though it took a few years to become what it is today, it has become an amazing network which helps lots of people.

They are holding a fundraising Gala Dinner on the 12th of October at the Novotel in Parramatta. There are only 30 tickets left and they would love to see this be a sell out event. They are raising funds to keep being able to assist the growing number of families who have a member with a rare chromosome disorder.  Tickets are only $110 and include a three course meal, beer wine and softdrink, entertainment by a magician, a special school dance group, a band, pop up photo studio(that’d be me) and a one man show. There are some amazing auction items up for grabs on the night as well.  The theme for the night is “unleash your inner child”.  And who wants to grow up to be mature and sensible when you can really let that inner child out to play for a night.  We all need to act like kids sometimes.  It’s good for the soul.  If you have that night free and live anywhere in the Sydney area, I would urge you to get a few friends together and come along to this fantastic event.  It is cheaper than a night out at the pub, much more fun and you’ll be helping families who really need some support.

 

ARCAN gets NO funding.  They are registered as a charity authorised to fund raise in NSW, so donations are tax deductible.  Because these children are born with RARE chromosome disorders, they seem to fall through the cracks of organisations that help others in similar situations.  They don’t “fit the bill” so to speak.   I can’t even begin to imagine how lonely a journey it would be without this amazing network of people there to give support to each other.  Their ambassador, the courageous Lauren Huxley will also be there on the night.  Please click   www.arcan.org.au  to get more information or to book tickets.  I really hope if you are a Sydneysider, that you will consider coming down to the Novotel and joining us for a great night.

I always think how lucky I was to have had 3 healthy children.  I also know how lonely a journey it was when my daughter was killed.  I know how alone I felt.  I know that no one understood completely what I was going through.  People tried, but unless you’ve experienced something so life changing, you can’t understand it.  Empathise? yes… but not understand.  This organisation puts people who are experiencing that sort of isolation in touch with others in a similar situation, thus creating a network of people who have some idea of what other members are going through.  THAT, my friends, is worth more to these families than all the tea in China.  If you can’t attend on the night, I’m sure you’ll find a way to donate and help out on the website.   Have a look at those beautiful faces below and think about how you can help.

Happy FUNraising….. Livvy 🙂

ARCAN

 

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