REFLECTIONS ON WILLIAMS SYNDROME AWARENESS

    By
    Yumi
    -
    image credit from Channel 10, The Project

    Yumi explains her passion for supporting the Williams Syndrome Awareness Month. Take it away Yumi…

    Williams Syndrome Awareness Month is every May. Unfortunately, I am a week late in writing my article on Williams Syndrome juggling a lot on my plate. Last year, Jacky and Renee from In The Cove kindly supported me so that I could write an article for awareness month. You can read about it here.

    I was very pleasantly surprised when the story was picked up by a producer from The Project. The producer was so fun, kind and compassionate to Caleb and our family. 

    This is the link to The Project’s feature story on Williams Syndrome. Our family was thrilled to be able to raise awareness on William’s Syndrome. Watch here

    Williams Syndrome is:

    1. A genetic microdeletion on chromosome 7 resulting in 25-28 chromosomes missing
    2. The natural ability to spread love and joy to all
    3. An innate emotional connection and great affinity with music
    Caleb and his brother at a family music therapy session at our first Williams Syndrome Camp.

     

    The Steve Waugh Foundation funds our annual Williams Syndrome Camps through SNUG Family and Communities Program. Each year, volunteers from The University of Newcastle (e.g. occupational therapy, nursing students and social work students) to help provide respite for children with WS, their siblings and carers. Free music therapy sessions are always a highlight of this amazing program.

    However, it is also a multitude of complexities. Children with this condition often need a lot of therapy including occupational therapy, pediatric physiotherapy and speech therapy.
    Caleb also received feeding therapy and musical therapy in his early childhood years.    There is also a host of medical risks including cardiovascular risks. In particular,  supravalvular aortic stenosis (SVAS) which is the narrowing of the tubes to your heart. This is the classic Williams Syndrome marker. Young babies with WS also have difficulties with feeding, hypercalcemia, latching whilst breastfeeding and colic. Caleb has had five surgeries to date for enlarged tonsils, adenoids, grommets and even hernias at only 10 weeks old. He will be needing more surgeries in the future.People with WS are also at risk of sudden death with any anaesthesia including local anaesthesia. This means a simple dental procedure needs to be coordinated with anesthetists, a cardiologist and other specialists. Caleb is also at risk of sudden cardiovascular issues despite his mild SVAS having improved to the point that he has a ‘normal’ heart. He does still have issues with his valve and a heart murmur. I try not to think about the heavier issues and focus on the positives.

    Caleb at The Sydney Opera House with The Sydney Harbour Bridge in the background. The Harbour Bridge is one of Caleb’s many loves and passions.

    Last November, I was made a Director of Williams Syndrome Australia. This year we have planned an exciting Williams Syndrome Walkathon fundraiser. This will be our family’s first walkathon and we look forward to raising funds for supporting families who have children and adults with WS.

    Save the date! Or donate to support Williams Syndrome Australia. We hope some of the funds can go towards more research and to support families going through challenges.

    We have planned to organise an expert on WS to help educate parents on this rare and fascinating syndrome. Unfortunately, unlike the US, Australia has no Williams Syndrome Clinic and our conferences are not very often. There has not been a conference in Sydney for at least 7 years. The WS community is keen to do more for our kids but funding is limited.

    There is a keen interest from families to do more and my greatest dream is to one day, have a big ball where we can invite all our friends, family, therapists, teachers and schools and workplaces to celebrate with our beautiful children. I envision dancing the night away to incredible live music where no doubt, the beautiful WS stars will shine so brightly with their deep emotional connection with music. 


    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.