SEE MOEBIUS

Monica said in spite of the condition being so rare when Madison was diagnosed, she actually knew what Moebius was because she had see it covered on an Oprah episode.

Monica said her daughter did not feed from a bottle normally, and the young mother had to learn a lot in the rst 10 days of Madison’s life in the hospital.

While symptoms vary by case, Madison said, “ is condition makes it where the nerves in my face just never developed completely. It’s hard to show any emotions. My speech can be slurred a little bit.”

While some issues have faded over the years, Monica said Madison, now 23, grew up without the ability to use the muscles in her face, meaning she does not blink properly and can’t smile or frown like others.

Monica said in growing up and going to school, Madison was never very social. She mostly kept to herself and kept quiet.

Madison said it was hard at times growing up when she would be different from other children. However, growing up in Castle Rock, Madison said she was never bullied or made fun of like other kids she has met with the disease. Madison said she just learned to explain to people why she does not smile. Students and friends would ask a few questions, Madison said, but mostly left her alone.

Monica said with multiple surgeries, procedures and a lot of growth over the years, Madison has grown into a successful adult thanks mostly to services and support provided by the Moebius Syndrome Foundation.

With so few people having Moebius, Monica said it was tough to nd support to help face the challenges with Madison, who was her rst child.

Eventually, Monica and Madison started attending annual conferences hosted by the foundation. At these gatherings, Monica said, she was able to talk to other parents dealing with similar issues and Madison was able to nd lifelong friends who understood the challenges of Moebius. e two attended their rst conference when Madison was a year old and have continued going ever since.

“Over the years she would feel comfortable and at peace because she was around people with the same condition,” Monica said. “She was able to see adults who showed her they are able to live successful lives.”

Madison said the conferences helped a lot because she found friends who didn’t judge her or ask questions — they understood why she can’t smile.

“It’s a good resource for people,” Madison said. “It’s rare, so it’s isolating. When I heard from people — I learned there were resources and treatment. ere were options for therapy.”

Madison agreed that seeing adults with the condition speak and show her they succeeded was helpful. Madison recently nished college and got her rst job, but challenges with how to handle the condition still exist.

Madison said with job interviews and adulthood, she has to balance the need to tell people about having the syndrome and keeping quiet to keep them from judging her too quickly.

With her most recent job interview, Madison said she practiced tricks to keep them from thinking she was not interested or didn’t care because her facial expressions couldn’t show them she wanted the job.

Instead, Madison said she practiced seeming more engaged by asking more questions and keeping dialogue owing.

“It’s really hard to decide if you should tell your boss,” Madison said. “I don’t want this condition to de ne who I am. I know if I work to maintain eye contact and appear as engaged as possible it will help me.”

Madison got the job and is in her rst month working as a detention specialist with the Douglas County jail.

As the Moebius Syndrome Foundation continues to provide support and services to families a ected by Moebius, the nonpro t recently announced that it is moving its headquarters to Denver.

According to the press release, the mission of the foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

To spread awareness and education about Moebius syndrome, the Moebius Syndrome Foundation along with multiple craniofacial organization partners will celebrate Moebius Syndrome Awareness Day (MSAD) on Jan. 24, 2023.

According to the press release, this is a day when members of the Moebius community around the world wear purple, host awareness and social events, and share information about Moebius syndrome across social media.