A few weeks ago, my wife showed me a Facebook post from a neighbor and friend commenting on a video about Down syndrome. The post (citing a video appearing on The Mighty) mentioned that someone should create a video about what it’s like to live with Down syndrome in Pittsburgh, and what an amazingly supportive community it is to raise a child with the condition. Working with my media relations colleague Andrea Kunicky at Children’s Hospital of Pittsburgh of UPMC, we spoke to program coordinator Sheila Cannon and Dr. Kishore Vellody at the Down Syndrome Center and received their blessing and help.
So began my Down syndrome journey.
When I took on this project, I knew next to nothing about Down syndrome. I’m not claiming to be an expert now, but what I found in creating this video was something remarkable – I met six wonderful families who opened up their worlds to me.
The picture painted was not always a perfect one. Dr. Vellody points out that the most important thing for a new mother to hear when she delivers a child with Down syndrome is simply, “Congratulations!“ Unfortunately, more than one of the mothers received less-than-stellar reactions that set in motion thoughts of fear and anxiety, something I hope our film will serve to alleviate for new and expectant parents who’ve received a diagnosis of Down syndrome.
I hope that in creating this video, people won’t see these children as different, as challenged, as less-than. I hope they see Ellie as Ellie, who loves music and is my youngest daughter’s classmate and buddy; TJ as TJ, who loves to dance and whisper secrets to his sisters; Josh as Josh, who through his knowledge and experience in and out of doctor’s check-ups can deliver life-changing (albeit imaginary) care to his mom; Mae as Mae, who flies through flash cards and loves playing ponies; Donovan as Donovan, who works hard in school and is an amazingly bold swimmer; and Evan as Evan, the “radiant warrior“ who recovered from two heart surgeries and beams love.
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