May is Williams Syndrome Awareness Month – Why ITC Wants You to Know About WS

May is Williams Syndrome Awareness Month.

Williams Syndrome (WS) is a genetic condition that is present at birth and can affect anyone. Some of the characteristics of Williams Syndrome include cardio issues, developmental delays and learning disabilities. These often occur side-by-side with striking verbal abilities, highly social personalities, and a great affinity for music.

WS affects one in 10,000 people. It is known to occur equally in both males and females and in every culture. Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly, and endearing. Parents often say the joy and perspective a child with WS brings into their lives has been unimaginable.

So why is Williams Syndrome Awareness Month so important to In the Cove? ITC’s wonderful content assistant, Yumi, has a child with Williams Syndrome, so we wanted to raise awareness about this rare condition.

Meet Caleb

You might remember Caleb from the One Village Shop as he was a shop baby from six months – 18 months.  ITC was a regular shopper at One Village Shop and it was always a delight to see Caleb and his friendly smile.

Caleb was diagnosed with WS when he was two years old.  He didn’t talk until he was two and started walking at two and a half years old.

Running a full-time business and looking after a child who had to undergo several surgeries meant that Yumi had to close One Village Shop so her family could concentrate on Caleb and give him all the support he needed.

Many babies with WS have life-threatening cardiovascular problems and they also need costly, ongoing medical care and early interventions (such as speech, physical and occupational therapy).

Caleb, thankfully, has only had a mild heart condition which needs careful and regular monitoring. He is at risk of sudden death with any anaesthesia and has had multiple surgeries already and will be needing more soon.

Caleb is now 9 years old and loves music.  He started music lessons when he was two years old. He is currently learning to play the drums at Big Music and is a member of his school’s training band. He loves music deeply and was even raving in the centre front row at the recent AC/DC tribute band concert at The Canopy.

Yumi’s family love living in Lane Cove, where Caleb is a very active member of the Lane Cove community attending his therapies, church, school and music/sport activities.

 

Most adults with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few can work a “full-time” job or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature– beyond the structure of school and family activities – they often experience intense isolation, which can lead to depression and increased anxiety.

Individuals are extremely sociable and experience the normal need to connect with others; however, people with Williams Syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

It’s Yumi’s family’s hopes and dreams that the local community will continue to be compassionate and accepting of Caleb as he grows up in Lane Cove.

Contact Details for Williams Syndrome Australia

Website:  www.williamssyndrome.org.au
Email:  [email protected]

Williams Syndrome Australia is a non-profit organization 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

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
21/6 Malabar Road
Coogee NSW 2034
www.williamssyndrome.org.au

ACN166 306 887 ABN 64 166 306 887

WSA is endorsed as a deductible gift recipient.

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