Author: Amber

Feb 2023 – Our 5th Anniversary.

Amber Events

A Huge Milestone!

Today, 5 years ago marked a very special day, a milestone of reflection and celebration.

Back in 2016 it all began as an idea: a blog to find support for our son, our family and connect with other XYY families and find more XYY guys.

With the support of our family and friends, my husband and I decided to create a platform to better understand XYY Syndrome, after our son was diagnosed and we found no support.

In 2018, the association was formed.

This day will always remind me of why we started this journey, with the association, and why we continue to create a more positive future for XYY Syndrome.

It is one thing to never give up on a goal but it’s another to live within it, and our XYY journey has shown many challenges.

This journey has been driven by my passion to help our son, to learn, understand and share lived experiences around this often misunderstood genetic condition.

Through better understanding we can make a difference and support those who need the extra help!

Together we will continue to make a difference and I thank our amazing team and everyone within the community for all your ongoing support to help make the XYY community feel heard.

Amber Gilkes

Chairperson

Jan 2023 – Awareness Exhibit!

Amber Events

“Connecting with our community”

On this day, three of our XYY families here in WA were invited to join in a photo shoot with our XYY boys!

The aim of this shoot is to raise awareness for rare, genetic, and undiagnosed conditions.

With ConnectGroups leading this project, our team at the XYY Syndrome Association of Australia Inc have joined them in working together with other support groups and local organisations, like ourselves, to make a difference in our community.

This amazing exhibit aims to help those diagnosed with rare, genetic, and undiagnosed conditions, not only to be seen but also to be heard. It is time for us to stand together!

During this shoot we shared our stories and lived experiences with XYY Syndrome. We are so excited about this opportunity and would love to see you at the exhibit!

Thank you for your continued love and support from the XYY Team!

The Exhibit details and flyer are attached.

What is XYY Syndrome

Amber XYY Syndrome

image

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.