Last week I attended my first ever fundraiser benefit; it was not the kind of fundraiser hosted by the local RSL, where you win a meat raffle and a bottle of the finest chardonnay. It was a very classy event where you dressed up in fancy clothes, sipped lovely champagne and bet in the silent auction, and it was all for a very good and close cause to me, The Foundation Angelman Syndrome Therapeutics.
One of my closest friends accompanied me knowing that this was something she wanted to support not only for me but for my brother too. I was disappointed that my Mum didn’t want to attend but I can understand she is very guarded and sceptical when it comes to discussing progress in the world of Angelmans. Before attending the event I was extremely nervous. I did not know what to expect and I did not want to talk about Harley with these strangers. Harley is one of the oldest Angels I have come across in the community so far, and I didn’t want to answer a question truthfully in case it wasn’t what they wanted to hear. What if I broke the spirit an AS parent? I wanted them to still have hope but I didn’t want to provide false hope. How wrong could I have been? My perspective changed as soon as we arrived at Miramare Gardens.
I ran into my brother Rhys in the car park, I had forgotten he was going to do the photography for the event. As we walked into the lobby we were overwhelmed by the assortment of silent auction items. It wasn’t just a couple of out of date items but hundreds of great things ranging from cases of wine, to surf lessons, to holidays, paintings and even a gorgeous diamond ring. I turned to my friend “whatever you do don’t let me bet on anything”, she nodded in agreement. As we made our way through the throngs of gifts we spotted my vice, a brand new GHD. Well both being woman we decided that betting on one item was ok and well we’d get our money’s worth out of a GHD. We also purchased two cute yellow paper Angels, excitement boiling over when we discovered that our little Angels came with prizes and were not just the decorative wall features we thought they were.
As we were ushered to our dining chairs, I couldn’t believe that there were four hundred and seventeen people in this room; the most important being Michaela Townsend who organised this grand event. I also realised I was sitting at a table of people who had AS children. At first I didn’t let them know I had an AS brother but I listened as they spoke about their sons and daughters and then without nerves I admitted my older brother had AS. Instead of bombarding me with questions they did none of the sort, we obviously discussed AS but I discovered that I was being overactive before. We were all just trying to expand our knowledge and find a supporting community; it was great to be able to discuss with a group of people that understood you instead of trying to understand what you are going through.
Not a dry eye was seen during the formalities when a video played highlighting all the young angels in the community. My friend gripped my hand; I don’t think she expected this reaction from either of us. Then Meagan Cross was introduced to the stage. I had informally met Meagan through our cyber networks and it was great to see her. She gave a wonderful and hopeful speech about finding a cure for AS. In the USA AS therapeutics was on the forefront, they had found a cure for AS in mice and that human clinical trials were on the Horizon. Then Meagan spoke of her daughter with AS. It was a lovely illustration of her daughter who like Harley has so many difficulties and so many outstanding qualities. My friend gripped my hand a second time, as my eyes unforgiving gave me away again. I needed to meet Meagan in person.
I decided to keep a distance as I saw everyone wanted to talk with Meagan but finally she made her way to our table. I sat next to her and introduced myself and she knew instantly who I was. At the same time my brother had joined our table and we talked and talked and talked. I was slightly star struck, filled with hope that in Harley’s lifetime there might be a cure, or some kind of therapy. We talked about how we can get involved more in the community, my brother and I walking away with a new sense of purpose. I could tell you about all the other AS families I met but theres too much to tell and too many people to talk about.
Back to the auction, the event raised over $70,000. This far exceeded the generosity I thought people we were inclined to give. Two people bet $4500 on nothing, an extremely generous donation for something that does nothing and needs nothing. As the night the night concluded I had my new GHD under one arm (it was a lengthy battle but I beat out a man named Kevin to claim my prize) and under the other a bottle of won Vodka. I felt elated I never thought people would care so much about a relatively unknown syndrome but I was proved wrong.
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