Reception for Down Syndrome NSW in Recognition of World Down Syndrome Day
Wednesday, 19 March 2025
Government House
Her Excellency the Honourable Margaret Beazley AC KC
We have a tradition here at Government House that, when welcoming people, we use a greeting in the language of the Gadigal, the Traditional Owners of these lands.
Bujari gamarruwa
Diyn Babana Gamarada Gadigal Ngura
It means “G’day women, men, friends [this is] Gadigal country.”
I pay my respect to their Elders past, present, and emerging. I extend that respect to the Elders of all parts from which you have travelled, as well as to any First Nations people here with us tonight.
In 1980, a group of parents of children born with Down Syndrome came together to advocate for, and support, their children and each other. This was the beginning of Down Syndrome NSW, which has now, 45 years later, grown to a membership of close to two-and-a-half thousand[1], and which offers services, programs, and connection to people with Down Syndrome and their families across their lives.
As all of you are probably aware, Friday is World Down Syndrome Day, a date—the 21st of the 3rd—chosen to represent the triplication—trisomy—of the 21st chromosome, the cause of Down Syndrome, or, at least, its most common form.[2]
It is an opportunity not only to raise awareness about Down Syndrome, but also, importantly, to celebrate the many achievements and contributions people with Down Syndrome have made, and continue to make, every day.
Although Down Syndrome is the most commonly occurring chromosomal condition in our community, the nearly 300 or so babies born every year with Down Syndrome in Australia[3] are certainly not ordinary people.
Their infectious laughter, affection, and cheekiness touches us all.
Every person born with Down Syndrome has their own unique gifts, potential, and strengths. They have their own story to tell, their own contributions to make, and their own aspirations to fulfill.
And because of Down Syndrome NSW, there are many people on hand to help and advocate for this very important group of people, including those who themselves were born with Down Syndrome.
However, we also know most face challenges many of us never have to encounter, including physical and cognitive developmental delays, increased risk of health conditions like congenital heart disease, lower immunity, hypothyroidism, and problems with seeing and hearing.[4]
And we need to be honest about this. Members of our community with Down Syndrome still come up against barriers imposed by misguided misconceptions and outdated stereotypes.
That’s why the visibility and advocacy is so important.
Tonight, in the spirit of World Down Syndrome Day, we not only celebrate and thank all in the Down Syndrome NSW team for facilitating such support, but also those who help make that support possible through their time and donations. In a moment, we will be presenting awards in recognition of their generosity.
To all… I think you deserve a big round of applause.
But… before we move on to those presentations, I have something else to do, and I might need the help of my co-Patron of Down Syndrome NSW, Dennis, up on stage.
[Mr Wilson makes way to presentation area]
For, tonight we have the privilege of announcing the newest Ambassador for Down Syndrome NSW.
Now, you may already have seen this person on TV, in shows like Home and Away, Janet King, Mr In Between, and Total Control.
Of all the roles he has played, however, he said in an interview last year that his most important has been growing up with, helping look after, and learning from his brother Luke.[5]
As someone with lived experience of seeing how the power of inclusion, respect, and opportunity can transform someone’s life, as well as his dedication to raising awareness, amplifying voices, and sharing stories, he is a perfect candidate for Ambassador.
In addition to this new role, he has also, along with the wonderful Elise, recently become a new parent.[6]
In case you haven’t already guessed, Down Syndrome NSW’s newest Ambassador is… Julian Maroun.
In appreciation for your taking on this important role, can I ask Julian and Luke to come up and accept, from all at Down Syndrome NSW, this painting by Sydney-based artist Bridget Kelly.
[1] “As at 30 June 2024, our total membership was 2,392, made up of 161 affiliate members and 2,231 ordinary members, of which 483 are people with Down Syndrome”: Lorraine Clark AM, ‘President’s Letter’, Down Syndrome NSW Annual Report 2023-2024, p.2, available here
[2] “Less commonly, Down syndrome occurs when part of chromosome 21 becomes attached (translocated) to another chromosome during the formation of reproductive cells (eggs and sperm) in a parent or very early in foetal development. Affected people have two normal copies of chromosome 21 plus extra material from chromosome 21 attached to another chromosome, resulting in three copies of genetic material from chromosome 21. Affected individuals with this genetic change are said to have translocation Down syndrome. A very small percentage of people with Down syndrome have an extra copy of chromosome 21 in only some of the body’s cells. In these people, the condition is called mosaic Down syndrome”: ‘Down Syndrome’, US Government National Library of medicine website, available here
[3] A study estimated, on average, 265 Australian babies born with Down Syndrome per year in the period 2016-2020: Syndrome Gert de Graaf, Ellen Skladzien, Frank Buckley, Brian G. Skotko, ‘Estimation of the Number of People with Down Syndrome in Australia and New Zealand’, Genetics in Medicine, vol. 24, 2022, pp.2568, 2570, available here
[4] ‘Down Syndrome’, Health Direct website, available here
[5] Selina Day, ‘Hame and Away Actor Julian Maroun Details his Most Important Role—Caring for Down Syndrome Brother Luke’, Seven News online, available here