Reflections on the Williams Syndrome
Walkathon, 2024
I laughed as my friend Mel asked, “Is that part of the walkathon as well?”
“No, I think that’s just a random other event,” I replied as I took in the dazzling colours.
We laughed as we admired the colourful Indian dancers with a rainbow umbrella having a photo shoot in the middle of the scenic bridge. As we took in the cultural feast for our eyes, we jokingly said it was like we’re on The Amazing Race (but snail speed!)
Mel is a beautiful friend of mine. She’s actually family. WS family. Sometimes our WS community feels even closer than my real family as the WS family really get each other. We are unique but the similarities are often uncanny, including the bizarrely random quirks of our children.
We meet around once a year because she lives up north, over an hour away. We are both mums to kids with Williams Syndrome and that’s how we met – through our WS family. Mel and I were in good spirits on Sunday, as we walked and chatted raising money for our kids. Liv is Mel’s 17 year old daughter and she has a dual diagnosis of Williams Syndrome and Autism. When I first met Liv, she was non-verbal but the last few times I’ve met her have been particularly joyous as she’s now able to respond verbally.
Sunday was a happy day for us. Liv couldn’t stop smiling all day and probably all night too. She’s happy, cheerful and loves ABBA’s music from the movie “MAMMA MIA! Despite all of Liv’s challenges, she is quite a good reader. Mel and Liv gave me lots of hope when Caleb was little. Seeing Liv being able to read despite being nonverbal in conversations was fascinating and awe-inspiring.
My son Micah is good friends with Liv’s brother Tom. At the WS Walkathon, they were heartwarming (and also a bit funny) to watch. Micah wanted to go on his scooter so Tom ran all the way with him! Micah and Tom get along like peas in a pod. At the young age they are now, it’s just all play and fun but one day when they grow older, they will have one another as support. They won’t feel so alone. The reality is, children who have a brother or sister with Williams Syndrome do really struggle. They have to take on extra responsibilities in the family. Sometimes that doesn’t seem fair. Their siblings can have serious cardio issues, multiple surgeries, take up a lot of mum & dad’s time etc. All I can do as a mum is to keep making these WS fundraisers, social events and camps happen to support all the WS families and their communities. It can be lonely and isolating to have a rare disability in the family. At times, it may seem like no one understands but then when the WS families meet together, it normalises our families and validates the difficulties of the deep issues we face.
Our hearts break for our kids with WS. We see them struggle at school, struggle to communicate and see & feel the intensity of meltdowns. Their anxiety becomes our anxiety. They are vulnerable in many ways but we protect and love them fiercely. No parent wants to hear that sudden death is a medical risk of the genetic condition your child has. That even a simple dental procedure using local anaesthesia could be life threatening.
My dream is to raise awareness for Williams Syndrome as my son Caleb lives in this community, attending a local school and living life to the fullest through his love for music, ball games, racing cars and people. You may have met him – the funny little boy who asks lots of questions like, “What car do you drive? Is it very noisy?” Or asking community bands: “What instrument do you play? Can you play a C note? B flat?” He’s a fun kid who just wants to be accepted and loved for who he is. He may have difficulties maintaining friendships as he gets older as this is rather sadly, common for those with WS. (Read more about Caleb here or watch him on The Project here).
WILLIAMS SYNDROME WALKATHON 2024 STATS:
Attendance: 300+ people
Donation tally: $17,000+
Williams Syndrome families: 8 families attended
Sponsors: Over 120 prizes in the MEGA raffle ticket drive
THANK YOU TO OUR MAJOR SPONSOR
A big thank you to our major sponsor Wiggles and Giggles Child Care Centre, WS families who attended and helped out on the day and the many, many sponsors, families, volunteers and members in our community who came to support families with a child with Williams Syndrome.
Thank you also to Sydney Tamil Arts for sharing your love for music with our WS families and the community. It was a wonderful celebration of our children having live music for them to both listen to and to be able to play themselves. Music lights up our entire brain and creates positive synapses. It is particularly special for people with Williams Syndrome with their deep, emotional connection to music. Research on WS brains show that it is on par with professional musicians. It is a rare and truly unique gift to feel music so richly.
Highlights
Visits from Paw Patrol & Olaf, face painting, henna, sausage sizzle, cake stall, the picturesque walk around the lake, Indian drum circle, connecting with WS families and seeing the happy faces of the WS children.
DONATIONS
Next year we hope to invite our local community to support us in the walkathon. It has been a long dream of ours to invite Caleb’s friends, therapists, medical team and members in our community who cheer us on to a big fundraiser.
Click here to donate to Williams Syndrome Australia.
Please write “ITC” in the notes of your donation if you donated through reading ITC’s article.
For more information on Williams Syndrome:
Click here for educational resources
Click here for medical information
Click here for therapy
