A Moebius Syndrome Story: An Unexpected Love that Crossed the Atlantic

Alex Barker never planned on marrying someone with his same rare diagnosis, but he has to admit, the shared experience has made him and his wife closer.

Alex has Moebius syndrome, a rare condition which impairs the function of muscles in the face, leading to facial paralysis. People with Moebius syndrome aren’t able to smile, which is one of the most frustrating characteristics of the disease. Alex explains that it makes meeting new people hard because they assume that you’re not friendly.

Talking with others who have the same diagnosis can help individuals living with the condition feel less alone. They’re able to share their frustrations, joys, and struggles. However, because its rare, it can be difficult to even find another patient to connect to.

This is why Tim Smith created a Facebook group in 2013 for those with Moebius syndrome to connect with each other. It was on this Facebook group that by chance, Alex met his future wife.

An Unexpected Love

Erin Smith, who lived in Clemmons, North Carolina reached out to Alex over Facebook Messenger after seeing him in the Facebook group. She’d reached out to many people, and decided to message Alex simply because he was from England, a place Erin loved.

This was in 2014. They soon began talking all the time. It was clear they had a connection which went beyond friendship. Their online communication went on for two years. One day, Alex asked if he could visit. Erin wholeheartedly accepted. The visit was planned for November of 2015.

“I was thinking, if Erin and her family are the worst people ever, it’s still a week in the States. I can still go and buy American things, so it’ll be O.K.”, said Alex in the New York Times

Alex’s visit went better than he could have ever imagined. He was warmly greeted by Erin and her parents, and throughout the trip he became more and more convinced that Erin was the woman he wanted to be with for the rest of his life.

Following his visit, the two lovebirds planned to meet again at the National Moebius Syndrome Foundation Conference in July of 2016.

That’s when Erin’s father intervened, pulling Alex aside and offering to pay for his trip to surprise Erin on Valentine’s Day. He had seen how happy Alex made his daughter and didn’t want them to have to wait that long to see each other again. Alex graciously accepted and the visit was planned.

The surprise went perfectly, and confirmed for Alex that he was in love. At the conference that July, Alex proposed and Erin joyfully accepted. On November 10, 2018 they were finally married in Lexington, North Carolina.

The happy couple plans to live in England for 2-5 years before moving back to North Carolina.

The Power of Connection

Alex explains that living with Moebius syndrome can be quite isolating sometimes. It’s common to be stared at and so easy to become self-conscious about your appearance. The fact that Alex and Erin share this experience has given them a special bond. While they both deal with slightly different symptoms, they are able to relate to each other on a very real level.

They show their happiness through their eyes, their affection through hugs, and their love through their actions.

Their physical limitations, although frustrating at times, have brought this couple even closer together and they are so thankful that their Moebius syndrome diagnosis allowed them to meet.

You can read more about this couple’s inspirational love story here.

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