Perfectly Me - Down syndrome advocates and legislation seekers

Perfectly Me ~ Our Journey

Perfectly Me: This amazing grassroots group was formed after our family joined the Down Syndrome community when our son Harvey James was born in August 2017. We received a prenatal diagnosis of Down Syndrome while we were five months pregnant. After being referred to many specialists and given very outdated information, one common themed emerged: our son would be a burden to our family. We were made to feel that our beautiful son was less than perfect. We were questioned multiple times why we would want to continue with our pregnancy. We could not understand why our son was devalued and less important or considered less perfect and he hadn’t even entered the world? Who made this list of perfection? Why, where and how does this unwritten list still exist and where the heck is it? With a sincere passion and love for politics and being an active, local City Councillor in Ontario, Canada our family knew this process of delivering a prenatal diagnosis needed some serious updating, fairness and consistency across our Country and our Government needs to get involved and help our families address this concern.

We were connected with some brilliant souls who are on the journey with us to bring forward Canada’s first legislation piece pertaining to Down Syndrome. (We have the legislation piece completed in draft form). It is time to update the way a prenatal diagnosis of Down Syndrome is given to families and make it consistent across our Province for all families no matter ones geography and soon across our Country. It was heartbreaking to hear that our story is not unique, common stories from families across our country were shared with us. The same feelings surfaced that their beautiful, pure, innocent child was judged, and labelled before they even had a chance to defend themselves and breathe air. They were less perfect because of one extra, tiny chromosome.

No one should EVER be made to feel less important or less perfect. No one should ever be devalued and judged. We are strong advocates for inclusion and believe wholeheartedly that we are not perfect, in fact, no one is perfect, but we are all, ‘Perfectly Me’! Our extraordinary son, Harvey James is exactly who and how he is supposed to be - He is Perfectly Me and we love every morsel of his being and every ounce of his extra chromosome!

Mission Statement

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