This is MoebiUS: Steven Maldonado on Living And Working With Moebius Syndrome

Steven Maldonado, Vice President of the Board of Directors of the Moebius Syndrome Foundation, has a passion for spreading awareness of Moebius syndrome and using his life experiences to help others navigate the complexities of living with Moebius.?

Steven said growing up with Moebius had its challenges, but having a supportive family and friends was helpful. He encountered a lot of questions and sometimes not the nicest comments from other kids, but overall he felt like he grew up like any other kid.?

His advice to others living with Moebius is that: It's okay to be different. Embrace who you are and the right people will find their way into your life. He encourages people to seek out the Moebius community and try to attend a Moebius Syndrome Foundation Conference or at least keep in touch with people who are going through similar things. He also said he’s always available to chat or answer questions.?

Steven is married to Leah Richter-Maldonado, who also has Moebius syndrome.?

They met at a Moebius Conference. They have been together as a couple for about 4 years and married for more than 2 years.

When asked if he thought it was different dating Leah compared to a non-Moebius person, Steven said he didn’t give it much thought. He said there was definitely a level of comfort when you date someone who shares a life experience such as living with Moebius syndrome, but he and Leah also always got along and had a shared sense of humor and interests.?

Steven said there was so much he loved about Leah. But, what stood out most to him was her compassion and kindness towards others - her students, her friends, and her family.?

Steven and Leah have a son named Malachi, who is a year and a half.?

He said fatherhood has been a wild ride. Overall, it's been a joy. He said children are a blessing, and he’s honored to be Malachi's dad.?

When asked if having Moebius has affected fatherhood, Steven said he definitely wanted to teach Malachi to respect people's differences and see them for the humans they are.?

Steven has a Bachelor’s and a Master’s Degree in Business Administration, and works as a Senior Research Administrator at University of Michigan.?

He said what he liked most about his job was working with his colleagues and working for an institution like the University of Michigan.?

Steven said he always thought he would work in healthcare, but didn't know if he would work on the medical side. Research grants administration combines his interest in healthcare and his skills in business and project management, and just was a good fit for him. He said it's a challenging, fast paced job and no day is the same.?

For the majority of his career, Steven said he hasn't directly disclosed having Moebius to his employers or coworkers. When he has disclosed, it's been tied to his involvement with the Moebius Syndrome Foundation and how he is involved with the Moebius community. He said Moebius is a personal thing, and he doesn't tend to disclose unless it's to family or close friends.?

Steven thinks job searching and the interview process can be grueling for any human, but when you add in having Moebius syndrome (lack of facial expressions, speech impediment, inability to smile, etc) it can add a whole other layer of complexity.?

Early on, he had a lot of anxiety during his interviews and constantly felt that he was being judged right from the moment he was in the interview chair. But as he interviewed more and gained confidence, he was offered his first job in research grants administration, and he said the industry has been overall good to him.??

Steven recommends that people with Moebius who are navigating the job search/interviewing process keep their heads up. Prepare and have a plan and then just go out and interview. Learn something from every interview and keep improving yourself. He believes the right job will come along when the time is right and wishes anyone currently seeking a job good luck.

Steven remembers getting turned down for jobs and at the time thinking he let the perfect job slip away. But now looking back, he realizes that everything happens for a reason and he is where he needs to be.?

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Written by Kari Storm, Communications Assistant, Moebius Syndrome Foundation