The following letter was written by parent Sarah Valiquette-Thompson.
My name is Sarah Valiquette-Thompson, I wanted to share the journey we are on to bring much needed, positive change towards the way we deliver a prenatal diagnosis of Down syndrome here in Canada, starting with Ontario first!
I am the proud mother to Harvey James (22 months old) and unfortunately had a very negative prenatal experience when we received our diagnosis of Down syndrome for our son. We were told multiple times that our life would be too challenging, that it would take time away from our daughter, asked why would we want the extra burden, and constantly questioned why we were continuing with our pregnancy. We almost gave in to this belief, as we had no family or friends in our community network that had Down syndrome and quite openly, had no idea where to look for help.
We often reflect and say thank goodness for Facebook as I recalled an amazing person I went to high school with, but hadn’t spoken to in years, posting pictures of his beautiful daughter that has Down syndrome. As terrified as I was, I connected with him over Facebook and he embraced my husband and I with open arms. That family gave us the first insight and positive hope of what our family would experience with a child that has Down syndrome. I will never forget their kindness.
Fast forwarding, when our beautiful son was born and with my love and passion for politics, we knew this process we endured needed significant changes. Where is this list of perfect anyway? Why was our son judged, questioned, and labelled? Why was our family given none of the positives about Down syndrome when we received our diagnosis? I later realized after connecting with other families across our province, and country, that we were not alone. Sadly, this is common practice and takes place worldwide. This is how and why our grassroots group was formed: to bring forward change, positive change on how we deliver a prenatal diagnosis of Down syndrome to families here in Ontario and to make it consistent across our province no matter one’s geography.
The help I have received to date and support is overwhelmingly amazing, it makes me tingle every time someone will message and ask, “How can I help?” I am so incredibly passionate and dedicated to this initiative and want to do this together. Our plan is to release a personal video containing segments of stories from families who would like to share their prenatal story to every MPP in our province. Following that, we intend to send every MPP a personal Perfectly Me Kit which will contain photographs and stories from families in their riding. This will be a way each MPP can familiarize themselves with our community, our families, and become aware of our legislation initiative. Lastly, we will advocate to get our legislation piece passed.
This is going to be a journey, but every day is a new step toward the light. Please be a part of the journey: find us on Facebook at Perfectly Me. If you know a family who went through a prenatal diagnosis, please help us connect. If you would like to share (2) photographs of your family and child to be included in our Perfectly Me kits please send to the email address below.
“I May Not Be Perfect But I’m Perfectly Me”
Sarah Valiquette-Thompson, Co-Founder