by Nathan Warner
Kasey Wessel of Otsego is one very determined 5-year-old. She has the extremely rare Möebius syndrome, which paralyzes a person’s face, not allowing them to smile, frown or blink. Yet her courage and determination paid off last year when she smiled for the first time after undergoing special surgery.
Möebius syndrome is a congenital neurological disorder that affects around two children for every million babies born and is still poorly understood by the medical community. Kasey has a milder form of the disease, as many children who are born with Möebius have club feet, missing toes and fingers, and other more serious degenerative effects.
In November of last year, Kasey underwent facial reanimation surgery at Children’s Hospital in Minneapolis that allowed her to smile for the first time. Dr. James Sidman and Dr. Daniel Sampson removed muscles from Kasey’s thigh and attached them in her cheek. Kasey is only the third child to undergo this groundbreaking surgery.
Kasey knows a lot about surgery. Since birth, she has undergone six surgeries related to her feeding tube, ear tubes and crossed eyes.
Kasey’s parents, Karla and Herb Wessel, say they don’t know what they would have done 10–12 years ago before the Internet brought awareness and a sense of community to people suffering from rare conditions and diseases. “I think we would have felt so isolated and alone,” Karla said. “The Internet has really helped to draw people together so they can share information on issues like Möebius. It really helps us communicate with our communities.”
Although Möebius is uncommon and poorly understood, people around the world
celebrate Möebius Awareness Day on Jan. 24 of every year to highlight those living with the condition.
There is no test for Möebius, so diagnosis comes largely by the elimination of other diseases and conditions. In Kasey’s case, doctors thought she had temporary paralysis or a pinched nerve until they finally diagnosed her with Möebius when she was three months old.
There are only three other families that the Wessels are aware of in Minnesota that have dealt with Möebius syndrome. “That’s how rare it is,” Herb said. “We certainly hadn’t heard of it before Kasey was diagnosed with it.” That isn’t to say that the family was ill-prepared. They took the diagnosis in stride and today Kasey is keeping up with kids her age.
Karla says they are truly blessed to live in a community that has great aids available for families struggling with rare issues. Kasey attends Early Childhood Special Education classes including speech therapy and dance classes from her teacher Deb Utsch at the Handke Center in Elk River.
Kasey still has difficulty verbally communicating and carries an electronic communication device with her to her classes. The device is about the size of a lunch box and helps her communicate needs if the words are hard for her to say.
Without the ability to make facial expressions, many Möebius sufferers face huge challenges to express their feelings. Many people are confused and put off by their lack of visible emotion, which prompted Möebius Awareness T-shirts to read, “We smile with our heart.”
“We always assumed she was going to do what other children do,” Karla says, “so she was raised with a lot of encouragement, but she hardly needed it with her fierce determination.
“We just want her to have the opportunities that all kids should have in life.”
Unfortunately, some of the barriers are outside of the family’s control. Karla says they’ve decided to hold Kasey back another year from starting kindergarten in part because of bullying and a lack of acceptance.
Karla says children often stare and whisper to one another when they see Kasey, but once they meet, they are usually welcoming and accepting. Not so with adults, she adds. “Other children aren’t the real problem,” Karla says. “Their parents are often the ones who are rude and rejecting.” She often overhears parents telling their children to stay away from Kasey at gatherings and on playgrounds because “something’s wrong with her.”
“People really need to be more accepting of those who are struggling with difficulties like Möebius,” Herb says, “bullying people and shaming them because of how they were born is really barbaric.”
Bullying or not, Kasey perseveres in whatever she sets her mind to. It has been a long road from the days when she couldn’t chew her food and needed feeding therapy, and she’s determined to overcome whatever comes her way.
Thanks to a supportive community and new medical procedures, Kasey can now show the world the smile in her heart with a smile on her lips.
The Wessels are selling calendars for $10 that highlight children and adults with Möebius to raise money so they can attend the Möebius convention in Philadelphia in July. To purchase one, contact Karla at [email protected]
For more information about Möebius syndrome, visit www.manyfacesofmoebius.com or www.moebiussyndrome.com.