Shantel Sonier on “Glitching with Nick”

Shantel Sonier, a rare mom and caregiver to Nick, who was diagnosed with GRIN2A, created the short film “Glitching with Nick” with her RARE Compassion Program partner in 2023.

Last year, I participated in the Rare Compassion Program and decided to go all in and turn our story into a video.  I registered for the RAREly Told Stories workshop featuring Kimberly Warner’s training.

Three of my favorite takeaways were 1) I didn’t need fancy camera equipment for filming.  My iPhone would work.  2) Adding subtitles is beneficial to viewers. 3) Filming in landscape view, instead of portrait, would provide the best results for this type of video.

From there, our RAREly Told Story began to take shape, transforming from concept to reality.

I have no background in filming and editing and I ended up spending a tremendous amount of time editing our video. I watched other videos on how to use the editing software. Then I tried to incorporate that newly learned knowledge into editing our video. There were just a lot of technical aspects in the editing process that I did not encounter in filming. And while I thought we had a creative approach by incorporating one of Nick’s symptoms of “glitching” as an effect in the video, I still feel as if our video hasn’t reached its full potential.  If I made a second one, I would collaborate with a video editor or production company from the beginning.  

So you might guess, my advice to first time filmmakers (because that was definitely me!) is to not overlook or underestimate the editing aspect.  I focused more on the theming and the why and the filming and didn’t realize that was just a small part of the process. Ultimately, it’s the final, edited product that reaches viewers, gains attention and opportunities and thereby gives impact.

And speaking of impact, we made this video to spread awareness about my son’s condition and the effect it has on our lives. At the same time, I also wanted to highlight and celebrate one of his milestones. He learned to ride a bike and that is literally the culmination of 18 years of therapy, hard work and persistence.  It is not giving up on the bad days, but learning to regroup.  It’s taking a challenging situation and searching for alternatives. Because for Nick, it was not only learning to ride the bike, but also building enough endurance to battle his other symptoms. Then finding a bike that would allow Nick to showcase his new skills, but still accommodate his needs (pedaling for short periods of time). In the face of adversity, we were able to find a solution.