Hi my name is Alison. I am 57 years old and happily single, living by myself in South Australia. I had a happy childhood and had friends all through my mainstream schooling years. As a young person I loved doing voluntary work in child care centres and toy library. I also loved being in the classroom setting in adult education where I completed my Childcare studies. Now I love traveling and also love doing voluntary work at our library and office work in the Royal Society for the Blind office. Those two jobs have finished recently, so now I plan to visit elderly people in their homes, as I love to play card games, talk and listen to their stories.
I only found out nearly two years ago that I have CHARGE syndrome. It was so liberating and empowering to know that I wasn’t the only one that was a bit blind and a bit deaf and couldn’t walk straight. Because I only have it mildly I have decided to put my energy into fundraising and awareness raising. Last year for a fundraiser I held lots of high teas. Our family like cooking so it was easy to have a variety of sweet treats. I also have a close circle of friends who were happy to work in the kitchen and serve. I also organised two raffles through the year and sold homemade greeting cards. Next year I plan to do a Lamington Drive.
My sister and I have spoken to various groups about Charge syndrome. For an activity we got them to wear ear plugs and distorted glasses so they get a glimpse of what it is like having CHARGE syndrome.
