—in the days that have passed since Moebius Awareness day last Thursday, I have had time to reflect and let my experiences sink in. The Moebius community really hit it out of the park this year. 97% of my Facebook news feed had to do with Moebius awareness and that was truly amazing to see.
It was such a whirlwind day and I could not fully process the events until the days after.
Being live on Global Thursday morning was a little stressful I guess, but having been an intern there for 5 months, I knew the ins and outs. I’ve been in that studio many times and have been on the sidelines watching the news live. Leslie still had a huge part in making me feel as comfortable as I did, however.
The speaking engagement at the school was what I was most nervous about and as Krista can attest to, I was a pretty big mess when I got there.
That event at the school ended up to be one of the highlights of my day, however. It wasn’t just the fact that the kids were so captivated by the talk that I gave, but it was the people in that school. The principal and vice principal were the kindest people, so open and welcoming. Sabina and her family are so warm as well, and it was so amazing to finally have gotten to meet them! The kids were really receptive and one girl even came up to me at the end and gave me a hug and thanked me for coming. It was truly amazing.
It was truly a beautiful day and I was surrounded by the most beautiful souls. I hate to be preachy but as many daily struggles as we all have with Moebius, I wouldn’t change it for the world. I know I have said this a lot lately but having Moebius has given me such a purpose in life that I don’t know if I’d have without it. Having Moebius has brought the most amazing people, opportunities and experiences into my life, and for all of that, I am truly thankful.
As part of my awareness day media tour, I was also featured in my hometown paper. The article is SO well written and I am sharing it here because I’m really happy with it.
Kelsey Ferrill, a 28-year-old University of Calgary student from High River has been busy pursuing a degree in communications, while also working at Heritage Park in Calgary. Ferrill also has a very rare neurological condition called Moebius syndrome.
The condition causes facial paralysis and speech issues, among other things. There are only an estimated 10,000 cases of Moebius globally and possibly between 10-15 people in all of Canada with it.
Ferrill has suffered from bullying because of her condition and she wants people to be more accepting.
She was part of the global Moebius Syndrome Awareness Day on Jan. 24, and spoke at a school in Okotoks as part of their Moebius Awareness Day celebrations. Ferrill was also on Global Calgary on this day.
“I really just want to use this opportunity to create awareness in Calgary and beyond in hopes of fostering a more inclusive society for us all,” she said.
Ferrill was born with Moebius and has been through a lot, which includes 15 plus surgeries for various things, years of speech therapy and other treatments.
“I have dealt with a lot of bullying through the years and also a lot of prejudice. Based on my appearance and speech, a lot of people assume that I have a mental disability as well and I can always tell when someone perceives me in that way, and it is always humiliating,” she said.
Ferrill has worked at Heritage Park in Calgary since 2017 and has really enjoyed her time, but she also has had to deal with some traumatizing moments.
“One such instance was when I was ringing through a family and the girl kept repeating “you look creepy.” It is difficult for me to even mention that, as it is tough to re-live and to say out loud,” she said.
“Another instance was when a man yelled across the store to me, “why do you look like that?” in front of probably 20 people plus my coworkers.”
Ferrill has to deal with a lot of misconceptions about her.
A lot of the time, people assume that because I look and sound different, I must have a cognitive disability as well,” she said.
“In actuality, very few people with Moebius have any kind of cognitive difference. It is a physical difference, not a mental one. We, as people with Moebius, want to be treated the same as everyone else. Another challenge is my speech impediment caused by a paralyzed tongue. I can tell right away when someone hasn’t understood what I have said and 28 years later, it is still always humiliating.”
“Through it all though, my main goal is solely to raise awareness so that such things don’t happen again, not just to me but to anyone with Moebius or any other disability.”
“That is why I believe that it is so crucial to get the word out there and really push for awareness.”
Ferrill believes that education is key to a more accepting society.
“People tend to judge what they don’t understand and I would like to change that,” she said.
“…Just because someone looks or sounds different doesn’t mean that they are really any different and it certainly doesn’t give anyone the right to treat them different. We really have a lot that we can teach people about tolerance, inclusion and the beauty of diversity. I really hope that I can show society that I, and anyone with any kind of difference, just want to be treated as an equal.”
“We want the same opportunities in life as everyone else.”
“The most important thing that I want people to take away from this is don’t judge someone before you know them. You have no idea who someone is by just looking at them. We are all so much more than our appearance.”
There is no cure for Moebius, but there are treatment such as surgeries, therapies, etc. There are only about 10,000 people globally with Moebius. People can donate to the Moebius Syndrome Foundation to help us fund research and resources for those with Moebius. The Foundation website is www.moebiussyndrome.org.