Author: Amber

Bridges lit up in support of a new National Charity

31/7/2023

On 13th July the Mandurah Bridge, Matagarup Bridge, Mount Street Bridge, Sky Ribbon, Joondalup
Drive Bridge, and the Northbridge Tunnel shined brightly from sunset to sunrise to acknowledge
the official approval of the XYY Syndrome Association of Australia Inc. as a National Charity.

XYY Syndrome is a genetic condition that occurs in about 1:850 males and often remains
undiagnosed. The condition is caused by a random split in the cells, which creates an extra copy of
the Y Chromosome (XYY). Only males are born with XYY Syndrome and diagnosis can only be
confirmed by a genetic blood test.

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 and relationships. This leads to further
isolation and deterioration in self-worth.

There is a significant amount of research that still needs to be conducted in order for this condition
to be understood and adequately supported, ensuring all XYY boys and men have an equal
opportunity to live fulfilled lives.

Recognition of XYY Syndrome as its own stand-alone condition, requiring specific XYY-related
specialist intervention, is strongly needed to ensure access to vital therapies and support for males
with XYY Syndrome and their families.

In 2016, the Gilkes’, a local Western Australian family, were confronted with their four-year-old son
being diagnosed with XYY Syndrome, a condition they had neither heard of nor understood how
deeply it would affect their child’s daily life.

After numerous attempts to find the right support for their son, they were continually let down by
the system and had to fight each day to advocate for their son’s needs. The family never gave up
and they continue to this day to help close the gaps for those with XYY Syndrome.

Even though that was only a few short years ago, so little information, support, or understanding
for boys and men with XYY Syndrome was available. Unfortunately, the same applies today, which
is where the Gilkes’, their extended family, and the association team come in.

Amber Gilkes, founder and Chairperson of the XYY Syndrome Association of Australia Inc.
decided that the lack of knowledge, information, and support for those living and dealing with XYY
Syndrome had to change. This prompted the first steps in creating positive awareness, with the
creation of the XYY Australia support page on Facebook and an association website. Not only
were these platforms used to locate other families in a similar situation but also as a way to stop
the negative perception being portrayed online.

As a parent of a child with XYY Syndrome, Mrs Gilkes understands all too well the need for
support, understanding, and community education on this specific condition. Her heart has always
been centered around the needs of her son, but due to the enormous gap in knowledge,
understanding, and support for those living and dealing with XYY Syndrome, the focus has
extended towards creating positive awareness and advocating for other families, boys and men in
need of extra support.

Amber Gilkes said, “The XYY Syndrome Association of Australia Inc. is championing the
awareness of XYY Syndrome. It focuses on providing the community with a positive understanding
of XYY Syndrome and support for those diagnosed, their families, and carers. It’s been a seven year journey to establish the Association and has been made possible only through the tireless efforts of raising awareness of XYY Syndrome within my local community, however further
awareness and support are required from the broader community, extending to state and federal
level.”

To celebrate the accomplishment of being granted National Charity status the XYY Syndrome
Association of Australia Inc. hosted an event to promote their cause and thank their supporters
who have helped them achieve this amazing milestone.

They are extremely grateful for the generosity of Brewvino Mandurah who had kindly donated their venue for this significant occasion.
From this prime Mandurah location overlooking the water, there will be an uninterrupted view of the
Mandurah Bridge lit up in their charity colours of green and yellow from sunset to sunrise.

In addition to their wonderful supporters, the guest list was extended to ministers from health and
education, WA Genetics, medical specialists, representatives from the health department, and
local MP’s and Councillors in order to promote further awareness of XYY Syndrome and how the
wider community can support those diagnosed.

Website: https://xyyaustralia.org/

XYY Syndrome Mission:
Creating awareness for XYY Syndrome by obtaining and providing the latest research for XYY
families and the community.
Networking with government services, medical specialists, general practitioners and educators to
create a better understanding for XYY Syndrome.
Rare Syndrome recognition for XYY Syndrome within State and Federal Government and
educational systems.

List of sponsors for this National Charity event
Brewvino Mandurah
Lions Club of Mandurah Inc.
Lions Club of Falcon Inc.
City of Mandurah – bridge
Main Roads Western Australia – Bridge and landmarks across Perth
Software First
No idea solutions
Kelly’s Hot water, Gas and Air
Lisa Munday- Labor Member for Dawesville
Kim Giddens – Labor Member for Bateman
SEA WEST – Mandurah cruises