Emma Morton, a 2026 Moebius Syndrome Foundation Educational Scholarship recipient, said she is truly grateful for the Moebius community.
Emma is majoring in English Language and Literature, and hopes to graduate in 2030. She aspires to become an Author, Editor, and Publisher.
Emma had been enrolled in the highest level English class offered by her school during the entirety of high school, and she said she loved every one of those classes. In AP English Language and Composition during her Junior year, her teacher helped her to realize that she had a voice that mattered and that could speak through her writing in powerful ways. In AP English Literature and Composition her senior year, her teacher showed her how authors cleverly used symbols in their works to enhance the story.
Emma chose to pursue English Language and Literature because she has loved reading since she was around five, and as she got older, she developed a love for writing as well. She reads a lot of fiction books, and she writes fiction and poetry for fun. Through these hobbies and the guidance of teachers, Emma realized that she had a gift for writing, and eventually she realized that it was something she wanted to do professionally.
What Emma enjoys most about studying English Language and Literature is getting to read more classic and prominent literature that has defined and shaped the popular understanding and opinion of certain genres, and she is very excited to continue doing it in college. Some examples from high school that stood out to her were Emma in the Comedy and Romance genres, and Frankenstein in Science Fiction.
What Emma finds most challenging about studying English Language and Literature is being open to other people’s interpretation of the same text. She said it is sort of like art in how the author writes with a certain meaning and intention, but we as readers have our own interpretations based on our unique experiences. There can be incorrect interpretations, but there is never a “right” one.
From the moment Emma was diagnosed with Moebius syndrome, her parents did whatever they could to learn everything about raising a child with Moebius. The Moebius Syndrome Foundation became a huge part of that when Emma was little. Through the foundation, her parents, and eventually Emma herself, were connected to a large community of people with Moebius and their parents.
When Emma got to the point in high school when she started thinking about college, her parents encouraged her to apply for as many scholarships as possible so that she could graduate college with no debt. The MSF Educational Scholarship makes that goal even more achievable.
Emma said the scholarship will be going entirely to tuition and/or associated costs.
Emma is not exactly sure what she wants to do after she graduates. She is mainly waiting to see what comes up during her college years. Her dream is to publish a fiction (either fantasy or dystopian) novel or series. Another role she is excited to research more is using her writing skills in order to help Assemblies of God missionaries by telling others about their stories and the amazing work they are doing around the world.
As for jobs, Emma has worked at her local country club pool for the past three years. She also worked for a few weeks in the Fall at her local YMCA, but realized that combining school and work was too much for her.
Emma said she has been blessed with the fact that her mom knows a wide range of people and was able to connect Emma with both Emma’s boss at the pool and the manager at Emma’s local YMCA. This made the interview process less intimidating because Emma had a strong reputation backing her interview, which made having Moebius less of an obstacle.
Emma said she didn’t encounter many questions about Moebius during her time at the Y.
As for working at the pool, Emma said she didn’t have a lengthy interview process, but while she works, there are many kids that come up to the check-in window. Most of them just stare or don’t notice her, but she remembers one girl last year who mentioned it (Emma’s facial difference). The girl was younger than 10 and said “Why does your face look like that?” Emma had briefly prepared for an interaction like this in her head, so she gave a polite response along the lines of “My face just works a little differently, and I was born like this.” The girl didn’t really understand and asked if Emma was sick, to which Emma told her she wasn’t. But, when the adult she was with finished checking in and the girl started walking away, she said she hoped Emma felt better.
Emma said it was an interesting experience, especially because the girl’s adult, when the girl had mentioned it (Emma’s facial difference) a previous time, shushed her and hurried her away. It made Emma realize that some people don’t know things because they are too afraid to ask questions, so they make assumptions or just ignore things instead.
Emma said she hasn’t had, in her opinion, a truly raw and authentic interview experience, so she doesn’t know how qualified she is to give interviewing advice. But she has a piece of advice that she thinks could be used for interviews, as well as in general. She would say just to be patient with people who don’t know or understand. Our world has made conditions like Moebius “normal” to the point that people don’t want to know anything about them, so they just accept it and fill in the gaps. Once you realize that and accept it, it’s easier to answer people who ask insensitive questions or are just clueless.
Growing up with Moebius was complicated for Emma. There were and still are days that she wishes she didn’t have Moebius and could just be “normal”. However, she grew up in church and became a Christian when she was very young. Having a biblical perspective on life gave her hope and joy that she wouldn’t otherwise have. She learned to see her Moebius syndrome not as a mistake or as something she should seek to fix, but as something that made her stronger.
She said having Moebius allows her to connect with a whole community of people that “normal” people can’t. Knowing that she is loved, She has a community of people who love her and one that understands, and knowing that her Moebius wasn’t an accident gave her confidence that was crucial as a child and has become ingrained in her as a young adult.
Emma said she did often get stared at and she heard about conversations people had behind her back from those who overheard them. But she was never outright bullied for having Moebius, not like you see in movies like Wonder. Although she knows that does happen to many children with Moebius. She said she usually just got left out of things like birthday parties and hangouts, and that never really changed.
When Emma switched to a private Christian school, she did make some friends, but she could tell there was still a barrier. She was sometimes the only person left out of things that may have seemed small, but meant a lot to her. She said she’s not angry at those people, but eventually she learned not to be surprised when she was left out of things. It was still hard, but she never let it change how she thought about herself.
She had close friends outside of high school that were a real anchor for her and who showed her that she deserved friends that reached out and invited her to things because they really cared about her, not as an afterthought.
For people who get left out of things, Emma’s advice is to know that it says more about them than you. You are worth caring about and if they don’t want to make the effort in getting to know you better, they are missing out.
For people who get stares often (which most of the time for Emma is by children), she said to wave at them. A wave is still an amazing option to connect with someone without words, even without a smile! This is true, especially for young children, who will likely recognize the gesture from other adults and/or kids in their life and will wave back. It’s a simple gesture that may not stop them from staring, but some kids and even adults will see that just because you look different, you’re a person just like them, and a kind one too.
Something Emma wants the Moebius community to know is she never realized how important having this community was to her until she was talking to one of her friends, who has Moebius, a few weeks ago. They talked about shared experiences that she never realized happened to anyone else, like having names misheard at a Starbucks or getting nervous about new situations because of uncertainty surrounding Moebius.
Emma has been to six Moebius Syndrome Foundation conferences and said the Moebius community is truly amazing. It is a blessing for her, and she knows it is for many others as well.
By Kari Storm
