100 signatures reached
To: The House of Representatives - Federal Health Minister
Awareness Day - Chromosome Variations
To Dedicate awareness of chromosomal variations to help thousands of patients in Australia, join in the solidarity actions with other Nations across the world. To show Australia’s support to the variations of Chromosomal Variations, we have been liaising with other countries such as, but not limited to South Africa, Germany, The United States of America, and the Netherlands.
Your role, as an Australian representative, is to represent all Australians with a variation in Chromosomal variations they may experience.
Acceptance can only take place when variations are not shamed, rushed or tabooed. Unfortunately, we live in a world that sees variations differently.
When we receive a blood result, we are told to move on and to get over our sadness and fate, because the results of syndromes are commonly perceived as something that needs to be accepted. As a result, the feeling of being misunderstood, and the end up grieving in silence; which has lead to numerous mental health syndromes, whilst at the same time, the topic of mental health becomes an even stronger taboo. Silent grief can become deadly grief. I've seen it too many times.
Having a chromosome variation Awareness Day recognised by our Australian government will be the first milestone to open our eyes to a complex syndrome that has never been properly diagnosed, addressed or managed.
We seek your public support with which 2017 will be the year the Australian Government supports their citizens that experience Chromosomal Variations.
Why is this important?
My son was diagnosed the day after his 10th birthday, with XXY (Klinefelters syndrome) as well as a duplication of chromosome15sq 26.3. There was nowhere to take him who could tell us what his next steps were, and what this meant for his future. The grey area took me, his mother, to Germany to search for answers. What I didn’t realise was how many people were affected by XXY alone within Australia and how many local citizens and their families were suffering because of the lack of knowledge within our own Country with XXY and many other Chromosomal variations. Klinefelters affects 1 in 500 boys and my son will go into high school with 2000 children. There should be at least 4 children with the same condition yet there is no knowledge or discussion with his condition, and the biggest symptom of this syndrome is learning difficulties and speech difficulties pre-puberty.