This is MoebiUS: Leah Richter-Maldonado

Leah Richter-Maldonado’s experiences living with Moebius syndrome have made her want to become an advocate and role model for others living with disabilities.

Moebius has affected Leah physically and emotionally.

Physically, she has a visual impairment because of her lack of peripheral vision. She has big field loss and described the tunnel vision like looking through a toilet paper tube.

She was also born with clubfoot, hearing loss, and a speech impediment.

Emotionally, due to having Moebius, Leah said she has been diagnosed with generalized anxiety, and she also struggles with social anxiety. She said her anxiety ebbs and flows. The older she gets, the more in tune with her emotions she’s gotten, and the more she can regulate them once she knows what she needs.

Growing up with Moebius was difficult for Leah. In elementary school, she was bullied and felt like she didn’t really have an identity. She said she wasn’t really great at school, and she didn’t have many friends.

To help deal with being bullied, Leah said she turned to her faith to process it, as well as journaling.

Being bullied led her to become an advocate for those who are different. But, it also led her to become more hesitant in certain social situations.

She would tell younger people who are getting bullied to keep their heads up, find people who love and understand them, and know they have a community of people with Moebius they can count on for love and support.

Although Leah struggled fitting in in school, at home and at church she felt like she had a lot of people who loved and cared about her and supported her. She felt like she was accepted for who she was.

She comes from a bigger family, with two older siblings and two younger siblings, so she felt protected by her family if someone said or did something to her because of her Moebius. She knew they would always have her back.

Leah had smile surgery when she was 10 and 11 years old.

Her parents asked if she wanted the surgery, and she said she did. She said she was not necessarily prepared for it, though, because it was a lot for a 10-11 year old to go through. She didn’t realize how much went into it. She said she’s grateful she had the surgery, though, and is happy with the results.

She acknowledged not everyone wants to get the smile surgery, which is totally valid, but she felt like it was the right decision for her.

Leah is married to Steven Maldonado, who also has Moebius syndrome. They met at a Moebius Conference. They have been together as a couple for 4 years and married for more than 2 years.

She loves Steven’s sense of humor and his passion for helping others.

It wasn’t the Moebius specifically that attracted Leah to Steven. Both of them having Moebius hasn’t defined their relationship, beyond it being nice to talk about Moebius with someone who can understand more.

Leah and Steven have a son named Malachi, who is two years old.

Motherhood has been one of the best, but most challenging experiences of Leah’s life. It’s been the most joy she’s ever experienced and the most frustration she’s ever experienced.

Because of her foot difference (due to Moebius), motherhood can be challenging. Balance issues and being on her feet so much can be more tiring than the average mother.

Leah graduated from Hope College with her bachelor’s in Special Education, and received her Master’s degree in Special Education- Autism Spectrum Disorders from Grand Canyon University.

She is a special education teacher. Until Fall 2024, she worked with students who were considered medically fragile, such as having trachs, using wheelchairs, and on ventilators. All were nonverbal as well.

In Fall 2024, she will be switching positions and working with kids with autism and multiple disabilities. She said many of the students are nonverbal and are learning how to communicate.

Leah wants her students to have fun in school and to know that they deserve to go to school like any other kid.

She said having a disability makes her even more passionate about what she does. She gets to bring her lived experience into work and knows what will make kids with disabilities be successful.

Leah said she very much resonates with the saying: “Be who you needed as a child”. She didn’t have anyone with a similar disability she could look up to, so she hopes to be that person to her students, and younger people with disabilities.

She also never saw a teacher who had a disability, so she wanted to be that example. She wishes there was more representation of disability in the teaching field.

Leah decided to go into the special education field because she received special education services when she was in school and felt a connection to that field. She experienced teachers who were really helpful and also teachers who weren’t so great, so that gave her an idea of what it took to be a successful special education teacher herself.

Special education is a very high needs field, so Leah was offered her job on the spot. She felt less anxious and self-conscious about her disability during her interview, as the field of special education is more accepting of people with disabilities and more used to working with people who have disabilities.

She interviewed for her job right out of college and has worked for the same school since then.

Leah recommends that people with Moeius who are going through the interviewing process practice common interview questions ahead of time, and film themselves answering the questions because she said that builds confidence. If they have a speech difference, talk very slowly and as clearly as they can. Also, know what the position entails, research the organization, and make sure they have follow up questions.

If interviewers are having trouble understanding Leah (and others with speech differences), she said they can ask her to repeat herself. She’d rather they ask her to repeat herself than them not knowing what she had said.

Before she became a teacher, Leah worked as an assistant camp director at a camp for the blind and visually impaired. Some of those campers said they couldn’t do something due to their visual impairment. Since Leah had the same impairment, she was better able to guide and encourage them because she was able to overcome that same challenge.

She also thinks parents need to see adults succeed with the same disability their kids have, to show them what’s possible for their kids. It’s important for them to have role models and see someone who has a disability leading.

Leah first met someone else who had Moebius when she was about 10 years old. And, she was about 13 when she attended her first conference. She was so grateful for the opportunity because for the first time in her life she felt like she was in a place where she was unconditionally accepted.

As an adult, Leah has spoken at several Moebius conferences, leading sessions about the special education process and also the joy of journaling.

She encourages younger people who have Moebius to explore and do what they are passionate about, find the community they need, and live life to the fullest.

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By Kari Storm, Moebius Syndrome Foundation Communications Assistant