Embracing visible differences: 2 Albertans with Moebius Syndrome share valuable lessons

Kelsey Ferrill knows firsthand what it’s like not looking like most people. The 28-year-old has spent her life making sure people didn’t notice her and always hoped they wouldn’t stare.

“A lot of people don’t understand what it’s like to be different,” she said.

Tweet This Click to share quote on Twitter: "A lot of people don't understand what it's like to be different," she said.

“There are some things that happen daily you can’t forget and it stays with you forever. Don’t come up and say, ‘What’s wrong with you?’ That’s not okay to do to anyone.”

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Kelsey Ferrill was born with Moebius Syndrome, a rare condition that impacts facial muscles that are partially paralyzed. Many aren’t able to express outward emotion.

This month, Ferrill stepped out of her comfort zone for others like her, giving a presentation in front of hundreds of students at St. Mary’s School in Okotoks.

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Nyla Way, a Grade 2 student at the school was also born with Moebius Syndrome. Her mom, Sabina Way, wanted Ferrill to help the other students understand and appreciate her daughter’s differences.

“I want people to know why she looks different and not pretend it’s not there,” Way said.

Tweet This Click to share quote on Twitter: "I want people to know why she looks different and not pretend it's not there," Way said.

“Some days I wish not for me, but for her, because those days will come with the older kids — you get bugged and I want to make her strong and know it’s okay to be different,” she added.

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The school presentation was a powerful moment for both Ferrill and Nyla.

“It’s like she’s her hero and I wanted kids to see there’s other people like Nyla doing great things,” Way said. “Kelsey isn’t hiding behind it even though she has a facial difference. That was important to me.”

Ferrill is also an ambassador for Positive Exposure, a charity created by a photographer who made a career out of shooting supermodels and uncovered a way to promote a more inclusive and compassionate world where differences are celebrated. “Change how you see, see how you change,” is the not-for-profit’s motto — something Ferrill is grateful to be aligned with.

“If I didn’t have Moebius, I wouldn’t have a purpose in life,” she said.

Tweet This Click to share quote on Twitter: "If I didn't have Moebius, I wouldn't have a purpose in life," she said.

“I wouldn’t change having Moebius for anything. It’s given me the most amazing opportunities. It’s brought the most amazing people into my life.”