Originally published June 2024. Updated and reshared for Williams Syndrome Awareness Month 2025.
Update from Yumi Kwon – Director of Williams Syndrome Australia (May 2025):
“It’s been another big year for our family – thank you for continuing to read and share our story. The support from the Lane Cove community means so much to us.”
May is Williams Syndrome Awareness Month – a month dedicated to raising awareness of a rare genetic condition that affects 1 in 10,000 people worldwide. It’s a time that always prompts reflection for me as a parent of a child with Williams Syndrome. You can read about it in detail here.
Caleb is now 11 years old …..
Williams Syndrome is a genetic condition present from birth, caused by the deletion of genetic material from a specific region of chromosome 7. It affects many parts of the body and often results in cardiovascular disease, developmental delays, learning challenges, and unique personality traits. People with Williams Syndrome tend to have highly social personalities, a strong affinity for music, and a very endearing nature.
Last year we were lucky enough to share our story on The Project:
However, behind the smiles and charm is a complex reality. While people with Williams Syndrome are often very friendly, they may struggle to form meaningful, reciprocal relationships in a neurotypical way. They often find it hard to pick up on social cues, interpret tone, or understand boundaries – things many of us take for granted. This can make them vulnerable and socially isolated, even though they seem outgoing and talkative.
My child brings joy and perspective to every day – but we also face many challenges that aren’t always visible. There are doctor’s appointments, therapy sessions, school meetings, and the constant need to advocate. It’s not always easy to explain the condition or the support they require, especially when they “don’t look disabled.”
What I wish more people understood is this: kindness and inclusion can make an enormous difference. A smile, a moment of patience, or an invitation to play – those small gestures can mean the world to a family like mine.
Williams Syndrome Awareness Month is about education, yes – but it’s also about empathy. About seeing past the labels and embracing the people behind them.
To learn more or support families like mine, visit Williams Syndrome Australia.
Thank you for taking the time to read and share our story. Every conversation matters.
— Yumi
Contact Details for Williams Syndrome Australia
Website: www.williamssyndrome.org.au
Email: [email protected]
Williams Syndrome Australia is a non-profit organisation that strives to enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education.
Their Mission Statement is:
- Providing information and emotional support to individuals with characteristics of Williams syndrome, their families, and the professionals who work with them
- Developing programs and services to help build strengths and meet challenges from early childhood through adulthood
- Increasing public awareness and understanding of Williams syndrome
- Encouraging and supporting research into a wide range of issues related to Williams syndrome
How to Donate to Williams Syndrome Australia
Click here for our PayPal link.
All donations to WSA are gratefully received.
WILLIAMS SYNDROME AUSTRALIA DONATION DETAILS
Donation $ ______ (Tax deductible over $2)
EFT BSB 032-040
Account Number 269 596
Name: Williams Syndrome Australia
State payment details as follows: SURNAME, Initials, Donation
Please make cheques payable to: Williams Syndrome Australia and post to:-
Williams Syndrome Australia
P O Box 399, Golden Square Vic 3555
www.williamssyndrome.org.au
ACN166 306 887 ABN 64 166 306 887
WSA is endorsed as a deductible gift recipient.
