Author: Amber

What is XYY Syndrome

Amber XYY Syndrome

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Wikipedia XYY Syndrome

Unique– Understanding Chromosome Disorders

http://www.rarechromo.org/information/Chromosome_Y/XYY%20FTNW.pdf

Kids Health – XYY syndrome is a genetic condition found in males only.

XYY Syndrome is a genetic condition caused by a random split in the cells at conception, creating an extra copy of the Y Chromosome (XYY). XYY boys are often taller than average and may suffer from hypotonia (weak muscle tone). They may also have delayed speech development and some learning difficulties, particularly those related to executive function. Many boys display poor impulse control, particularly in the younger and teenage years, and find it hard to both emotionally regulate and process sensory inputs. These struggles in their earlier years have a significant impact on their social development, making it difficult for them to form meaningful and lasting friendships or relationships. This leads to further isolation and deterioration in self-worth.

There is a requirement for the recognition of XYY Syndrome as its own stand-alone diagnosis, requiring specific XYY-related specialist support. This recognition will allow the early intervention of supports and therapies to ensure all XYY boys and men have the opportunity to live fulfilled lives.

Source: http://www.healthline.com/health/xyy-syndrome#Overview1

Article resources from Health Line-

Oct 2022 – WA Community Achievement Awards.

Amber Events

Another amazing moment for the XYY Awareness!

On this night, 21st October, Kylie Clark-Parry stepped in to represent our association, the XYY Syndrome Association of Australia Inc.

This was her response to the big moment!

“PROOF OF LIFE: Mummy’s big night out!”

When Tobias was born I could not have imagined in my wildest dreams that the journey of parenting him would have taken the path it has.

It is challenging, exhausting, hard, hilarious, scary, fun filled, adventurous and so much more. It has expanded my patience, my knowledge and my heart.

However, best of all it has brought me into a community of people. I am privileged to now do life with XYY Syndrome Association of Australia Inc.

They are more than my coaches and supporters; they are friends who have become family.

So last night it was my greatest honor to represent them at the WA Community Achievement Awards in recognition for all the amazing work we do as an association in supporting our boys and their families.

These are the moments that remind me of how far we have come and the privilege we have parents to journey together.

Creating more positive awareness for XYY Syndrome

Amber Events, XYY Awareness, XYY Syndrome , , , ,

The journey for XYY in our family has been almost 10 years. Over this time I have taken on the role to help create a more positive image around XYY Syndrome. When I first realised there was a huge need for support around this syndrome I couldn’t help but find ways to get the information out to the public in the hope of supporting those who need that extra support including our family.

With little to no information out there on XYY Syndrome, my family and I decided to start the XYY Syndrome Association of Australia Inc. to generate resources to hand out.

XYY is a huge part of my life’s journey and I will continue to create positive steps for the future of XYY Syndrome.

It’s time to take XYY to a new level and get information out on a larger scale, our association is not funded for any of our projects and this needs to change.

My next goal is to source funding to help our Association to the next stage.

One step at a time we will make a difference!

Thank you to those who nominated me for these WA awards, this is a great opportunity to be apart of this amazing event and a fantastic platform to share more understanding around XYY Syndrome.

Fantastic Australia Day Out!

Amber Events, XYY Awareness, XYY Syndrome

I am very proud to have been nominated and a finalist for the Australia Day awards Mandurah WA, Citizen of the Year award.

Just to be nominated is an amazing feeling. 

XYY Syndrome Association of Australia Inc. (WA – Not for profit for XYY Syndrome)

One step at a time our family and I have worked towards connecting the XYY community and having this syndrome recognised as needing extra support within the educational system. I would like to say a huge thank you to our committee for their ongoing efforts and support on this journey. David Gilkes Anne-Marie McArdle Vanya Almeida Win Gilkes Ken Gilkes this certificate of achievement goes to our team.

Creating positive awareness for XYY Syndrome -WA Regional Achievements and community awards 18th Oct. 2019

Amber Events, XYY Awareness

Another step forward creating positive awareness for XYY Syndrome –

WA Regional Achievements and community awards. Under the Community Tab -Community Service award

#waraca

I’m very proud to say I was nominated for an award and had the opportunity to attend the Gala dinner to receive a certificate of achievement for creating positive awareness for XYY Syndrome.