The XXYY Project has an active group of families in Australia who also have events.
Hi, my name is Carol, I am a 34 year old mother from Sydney's South West. My son was diagnosed with XXYY Syndrome when he was 3 years old. He is now 10 years old.
He was a beautifully placid, happy baby. The only real concern for the doctors was that he was born with clubfeet. So every time he didn't meet a milestone the doctors would assume it was due his extended time in plasters, or being 'a boy' and/or being 'lazy'. But I knew there was more going on. I was not going to stop until I got an answer. Doctors kept telling me he was fine because he would look them in the eye and draw them a picture. I now realise they were only really looking for Autism, which he doesn't have. He was so friendly with everyone even though he couldn't speak in sentences until he was 5 years old.
When I finally changed paediatricians, I got his diagnosis. Did I grieve the son I thought I would have? Yes, of course. But I am so very grateful for the son I do have. He is funny, kind, caring, brave, strong and a big sweet teddy bear. I love him more than I could possibly imagine. But do we have tough times? Yes ABSOLUTELY. I could write a book and fill it with some tales! I want to reach any aussie parents out there who have had their son recently (or not so recently) diagnosed who would like to make contact with me.
I know the fog we can sometime walk around in. But sometimes sharing your story can help someone else, that is my aim.
If you would like to attend one of our XXYY events in Australia where you can meet Carol and all of the other families, please click here to visit the events section of our Web site.
How many males with XXYY should there be in Australia?
Based on the prevalence of XXYY (1:17,000-50,000 live male births), there should be between 237-696 males living with 48, XXYY in Australia today.