Alex’s Story

Alex, 40, was born with Moebius syndrome – a rare neurological disorder, where the facial muscles controlling expression and lateral eye movements are weakened or paralysed, and which is often associated with other physical problems.

Alex Barker

Alex Barker

My name is Alex Barker and I’m forty years old. I have an extremely rare condition called Moebius syndrome. It affects me in a couple of ways. For one thing, I only have two fingers on each hand, and they are fairly stubby ones at that. My face is also affected. I can’t smile or frown, but I can stick my tongue out, which may well be useful at some time in my life. My cranial nerves are not fully developed, so this is why I can’t move my facial muscles. I also have very limited eye movement. Oh, and my feet don’t really work that well. Cognitively I’m OK, but my brain doesn’t work unless I’ve had lots of coffee! I also live independently too.

In some ways the condition doesn’t really affect me. I have a loving family who have been very supportive of me. I went off to university and studied journalism (after being placed into a special needs class at the local comprehensive school). I have a great social life. I work full time for a charity that helps support disabled people to use computers. I really love my job! When I’m not working, I enjoy doing photography. See some of my work at www.fourfingerphotography.co.uk.

I also love to play sports and have completed a few fun runs for charity. I also had the honour of playing football at Coventry City’s Highfield Road stadium a few years ago.

Dating is an issue for me though. I can’t smile and/or wink at women, and because of my appearance it does put people off. However, I’ve got to the stage where it doesn’t really bother me. If people can’t see me for me then it’s not my problem, is it?

I won’t pretend that my disability never gets me down. However if I ever get down, I only have to think of people who have learning disabilities or are in wheelchairs, or have terminal conditions. I’m so lucky!

Update

Alex volunteers for Facial Palsy UK, he helps with our social media, event photography and also speaks at functions telling people more about facial palsy and the work of the charity. In July 2015 Alex was refused entry at a pub in Cornwall because bar staff mistakenly thought he was drunk. Alex spoke to Facial Palsy UK and Changing Faces about the situation and the #ServeAlex campaign was launched. Alex took part in lots of media interviews throughout July 2015. He spoke about what happened at our AGM in October 2015.


Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 22-10-2016    ||    Next review due: 22-10-2018