Foothills resident Kelsey Ferrill shows a slight smile over an iced coffee as she prepares to tell her story. There was a time she couldn't have done that.
Foothills resident Kelsey Ferrill shows a slight smile over an iced coffee as she prepares to tell her story.
There was a time she couldn't have done that.
Ferrill was diagnosed as an infant with a very rare condition, Moebius Syndrome, which affects only about 10,000 people worldwide. She had no facial movement and was not able to suck on a bottle nipple – both symptoms of Moebius.
“They didn't find out until I was six months old what it was, because no one had ever heard of it before,” said Ferrill.
A paediatrician who had seen one prior case was able to confirm Ferrill's diagnosis.
Though doctors still don't know what causes Moebius Syndrome to develop in an infant, they do know how it presents. The syndrome prevents cranial nerves from developing properly, and is characterized primarily by facial paralysis – and the inability to smile.
To gift her the ability to wear a smile, Ferrill went through two “smile surgeries,” during which muscle from her inner thighs was transplanted into her face.
“The muscle nerves, it regenerates the nerves in the face and it gives you more facial movement and kind of the ability to smile,” said Ferrill.
She had the smile surgeries in Toronto at age five and six. Starting at eight years old, Ferrill went through a series of surgeries on her eyes over the course of six years.
“I had probably four or five surgeries on my eyes, just because the muscles were so tight, they went in and fixed the muscles so my eyes would work together more,” said Ferrill.
She said Moebius Syndrome has a spectrum of severity. Her condition would fall toward the less-affected side, she said.
“I know people who were born without an arm or a leg, stuff like that,” said Ferrill. “Each case is totally different.”
Because of the facial paralysis, Moebius Syndrome affects speech and physical appearance – something that does not go unnoticed by people around her.
Ferrill said growing up and attending school in High River was okay, because she knew her classmates from kindergarten through to Grade 9 before she attended high school in Calgary. She said overall school days weren't horrible, but there were some instances of funny looks, questions and bullying.
“It never stops, even now,” said Ferrill. “You've got people who are like, “What happened to you? Why do you look like that?'”
One day at Chinook Centre mall in Calgary she was approached by a complete stranger who asked, “Is there something wrong with you?” When she said there was nothing wrong, he replied, “Then why do you look like that? Is it Down syndrome?”
Ferrill was speechless.
“It's happened a lot, but that's the story that really sticks out for me,” she said. “I remember it so clearly because it was so out of nowhere and I didn't know what to say. It was not a good experience.”
Besides struggling with questions from strangers, Ferrill said she used to struggle with her own self-doubt because of Moebius.
“When I was younger I didn't even acknowledge it at all, I could not even say the name,” said Ferrill. “I think when you're a teenager you don't want to acknowledge you're different, so I just didn't. It just made me feel different.”
A conference changed it all for her.
Every two years, the Moebius Syndrome Foundation Conference takes place, where people from around the world can come together and share their time and stories. Ferrill attended her first conference in 2010 and was awestruck.
“I was 19, and I'd never met anyone with Moebius before,” said Ferrill. “I went to the conference and it was like walking into a parallel universe. People were exactly like me. It's not like every day life, when you feel like people are staring at you. It's people who are like you, and they know what you go through.”
It was a life-changing experience. Suddenly it was okay to have Moebius, because there were other people with the same struggle and she was part of a community, like a second family.
From that moment, things were different. Ferrill decided to dedicate her life to advocacy.
Her first step was returning to school. She received her diploma in journalism at Southern Alberta Institute of Technology (SAIT) before moving on to the University of Calgary to earn a combined degree in communications.
“I remember so clearly my first day at SAIT,” said Ferrill. “I was sitting by the Tim Hortons in the Senator Burns building, and I just remember I was like, “What am I doing here? I'm never going to be able to do this. I can't do this, why am I here?'”
After a difficult first semester, things took a turn for the better. She reached out, began talking to classmates and instructors, making lifelong friends and gaining a new support system.
She now calls her time at SAIT the best two years of her life.
It helped build her confidence and provided her with the education and experiences she was looking for to learn how to apply her passion for people with disabilities to real-world advocacy.
From writing blogs to helping with and organizing awareness campaigns for Moebius Syndrome Awareness Day, Ferrill is determined to spread the word that people with disabilities can do anything they put their mind to by using her personal experience to stoke the fire.
“I feel like if you have a story to tell, tell it and make the world better than how you found it,” said Ferrill. “If I don't tell our stories, if I don't get the message out there, who will? That's why I do what I do, because I know there is so much prejudice out there and not just to me, and not just to people with Moebius, but people with any disability.”
