Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it.
At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and more, physical challenges, learning difficulties, social challenges and all sorts of other little goodies isn’t a walk in the park…but that doesn’t mean it isn’t also filled with joy.
Our family has small pleasures and belly laughs. We applaud both our kids’ milestones and we challenge those around us to see our daughter with Williams Syndrome through the same lens through which they view every other child. We look for inclusion, and stand up to barriers. I seek out other families walking the same path and am on call for those just starting this journey (even though our journey has only just begun).
I also weep with families whose beautiful children are taken too soon, leaving this world a happier place for having been here.
It is true that it’s much more likely that our children will be taken too soon.
This is why I also work tirelessly to spread awareness and raise funds. Not because my daughter’s syndrome is so sad. But because I can’t bear the thought of all the happiness that is packed into my tiny girl could leave us, unexpectedly, in a sudden event, for no reason except we just don’t know enough about Williams Syndrome.
So please, please join us on Tuesday May 31 as we take to Twitter to raise awareness for Williams Syndrome and spread the word about the #WSHappyWalk.
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 Fujifilm, and more. There is now over $600 in prizes in total.