Life with Soran, an eight-year-old with Down syndrome who loves to dance
Zach Fenlon is a first-year student in the Mel Hoppenheim School of Cinema.
It all started in my last year at John Abbott College. I was taking a film production course and had to create a short documentary on an interesting person.
Immediately, I thought of Soran. He’s an eight-year-old boy with Down syndrome who loves to dance, and he doesn’t let society limit or define him.
I began by interviewing his mom, Sonia Guarascio. Following that, I spoke with Soran’s dance teacher, B-boy Luca Lazylegz Patuelli (BComm 09) — the Concordia alumnus who received international recognition after his appearances on The Ellen DeGeneres Show and So You Think You Can Dance.
I thought the CEGEP project would be the end of my interaction with this young boy and his family, but a few months later, Sonia asked if I wanted to become his Big Brother. I said yes right away!
Soran always makes me so happy, and I realized that if his smile has the power to brighten my day, what kind of filmmaker would I be to keep it to myself?
I decided that if I was going to be volunteering with him, why not bring along my camera? Each week we made a video together, with the intention of bringing people joy and raising awareness about the abilities of people with Down syndrome.
I’ve had the pleasure of knowing this family for over two years now, and I have learned so much about love and life — both from Soran and from his mom, the most inspiring and courageous person that I know.
About a year ago, Sonia informed me she had been diagnosed with breast cancer. She underwent surgery, but the cancer progressed, and she is now going through chemotherapy.
We used to joke about how Soran should be on The Ellen DeGeneres Show. After this summer, however, I realized that Sonia is the true hero in this story. She stays so strong and positive every day, and I think she deserves some recognition.
This is why I started the hashtag #GetSoniaOnEllen, in the hopes that we could spread her inspiring story far enough to reach the show’s producers.
This summer, I chose to keep my youtube channel inactive, to respect the family’s privacy while they adjusted to their new situation. Now that things have started to stabilize, I’m bringing back Life With Soran — and I hope to make it better than ever.
This fall I started at Concordia’s Mel Hoppenheim School of Cinema and have begun to incorporate the skills learned through my weekly sessions with Soran. My first video, called #GetSoniaOnEllen, was posted earlier this month and has received almost 4,500 views.
I encourage everyone to keep sharing it, with the hopes that we can reach Ellen one day soon.
Find out more about Concordia’s Mel Hoppenheim School of Cinema.