What is XXYY?
XXYY is when an individual has two extra chromosomes.
This can include:
Developmental delays
Speech impairment or delay
Tall, considering family history
Behavior outbursts & mood swings
Learning disabilities
Intellectual impairment
ADD or ADHD symptoms
Autism, autism spectrum, PDD-NOS
Scoliosis
Clinodactyly (Curved-in pinky fingers)
Low muscle tone
Flat feet/club feet
Sterility
Delayed sexual development
Undescended testes
Low or no testosterone
Dental problems
Leg ulcers
Heart defects (ie ASD,VSD, ToF)
(Please note that not all boys with XXYY Syndrome experience all of these symptoms)
XXYY is still not completely understood, mpre research is needed
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. Drs 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.