Smiling on the inside
Twenty-three-year-old Kelsey Ferrill is on a mission to help people understand the rare, incurable neurological condition she has lived with all her life.
The first-year journalism student is hoping to educate people about why she looks and sounds the way she does by hosting a booth in the Stan Grad Atrium on Jan. 24, the global Moebius Syndrome Awareness Day (MSAD).
“I want to raise awareness so people are more understanding,” said Ferrill, who believes that the more people know, the less they stare and question her about her condition.
Moebius Syndrome has a multitude of physical symptoms, but is most often characterized by facial paralysis and the inability to blink or move one’s eyes from side to side. These symptoms are caused by a malformation or damage of the cranial nerves, which control functions such as facial movement.
Ferrill—who was born with these symptoms and was diagnosed at six months old —also has speech problems because of the paralysis that affects half of her tongue.
This symptom causes some people to have a hard time understanding her, and “it definitely does make communication difficult sometimes,” she said.
Ferrill has had at least 20 surgeries to correct some of these symptoms. As a result, she can now blink, “but it doesn’t happen a lot.”
She’s also had surgeries to move functioning muscle from other areas of her body to her face to create the ability to smile. However, according to Ferrill, “it’s not a ‘typical’ smile,” since she can only move the corners of her lips upward and can’t show her teeth.
Despite her condition, Ferrill keeps a positive life attitude.
“You can’t change it, so you go along and do the best that you can.”
Ferrill’s MSAD booth will be open from 11 a.m. to 1 p.m. on Jan. 24, and the booth will feature Moebius Syndrome information pamphlets, an educational slide show, and draws for prizes, including a draw for free concert tickets.
On Jan. 24, Ferrill is encouraging people to wear purple, the official colour of the Moebius Syndrome Foundation.
The awareness day is being made possible through the assistance of SAIT’s Student Association (SAITSA), which is helping Ferrill organize her booth and is donating the door prizes.
“SAITSA is proud to be supporting a student who is so passionate about raising awareness about her situation, and [of] the larger idea of having a supportive and judgment-free campus,” said Amanda Hanna, SAITSA vice-president of student life.