You may have seen a couple of photos of my friend Melanie’s little girl on the blog over the last few months as she has shared a couple of posts on my blog. What you might not know is that her daughter has Williams Syndrome. If you haven’t heard of Williams Syndrome you are not alone. This rare genetic condition that is only seen in 1 in 18,000 births.
The scientific explanation behind Williams Syndrome is that individuals affected have a small deletion of about 26 genes from chromosome 7. However those 26 genes play some pretty big roles and people with Williams Syndrome have a variety of medical problems includingcardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.
So why is it important to get the word out about Williams Syndrome (WS)? Because anyone can be born with Williams Syndrome. This syndrome is seen in very culture and occurs equally in males and females, but it can be difficult to diagnose as the first signs and symptoms are not specific to WS and include low weight gain as an infant, low muscle tone, and heart defects. Because it is so rare many doctors have never treated someone with Williams Syndrome which is why awareness is so important.
Melanie’s daughter, Alma, was diagnosed at 5 months old. And just look at the little lady she has grown into today I will be joining Alma and Melanie to take part in the Happiest Walk in Canada the Walk for the CAWS in support of Williams Syndrome research. There are 6 walks happening across Canada this year. But don’t worry if you can’t get out to one, you can still take part in raising awareness and supporting the Canadian Association For Williams Syndrome (CAWS) too!
Anyone can join the virtual #WSHappyWalk by taking a short video or photograph of them out for a walk. Then post to your favourite social media site (Facebook, twitter, instagram, heck even snap chat we are not picky) with the hashtag #WSHappyWalk and donation link, then challenge friends and family to do the same.
To kick of the #WSHappyWalk we are throwing a party… at Twitter Party!!! And a party is not a party without gifts. We’ll be chatting about Happiness, Williams Syndrome , the #WSHappyWalk and how you can help spread awareness. Plus, you could win an iPad mini courtesy of Telus, an Instax mini8 camera from Fijifilm, and more. There is now over $600 in prizes in total.
Date: Tuesday May 31, 2016
Time: 9:00pm EST
Looking forward to chatting with you then!