Moebius Voices

Q. How are you affected by Moebius Syndrome?

A. I am fortunate to have a fairly mild case of Moebius. I have the facial paralysis and no lateral eye movement, but other than that no other symptoms.

Q. When were you diagnosed, and what were your parents/family told about Moebius Syndrome?

A. My parents were very fortunate in that there was a doctor at the hospital I was born at who had seen Moebius before, so I was diagnosed very early on which really helped my parents to know what to expect (difficulty feeding, etc.)

Q. What was childhood like for you as a kid with a facial difference?

A. Being a kid with any sort of difference is always going to be a challenge. I was bullied, but I learned to cope with it and ignore the bullies, and they soon got bored and moved on. My parents were amazingly supportive, and the experience made me very resilient and gave me a great sense of self-worth.

I was fortunate to have a talent for music, so I ended up being a bit of a superstar at primary and high school, playing drums and helping out with various events. I even used to DJ the school discos. Lots of fun!

Q. How did you navigate adolescence and young adulthood?

A. All the usual teen stuff, hanging out with friends, going to bars and clubs, having fun. I was never much of a hit with the ladies, but I've been lucky to collect an amazing group of friends via school, college, and my interest in music.

In my early teens I also discovered a fascination with computers which kicked off my career as a software developer, which I still enjoy to this day.

Q. What is lifelike for you now as an adult?

A. My interest in computers has enabled me to have a great career. In 2016 I moved from the UK to New Zealand to live and work as a software developer. I worked for Xero (the accounting software people) for a couple years and then spent a couple of years as a contractor working on various projects including one for the New Zealand government, which was very cool. New Zealand is an absolutely stunning place.

I returned to the UK in 2020 to be closer to my dad who suffered a stroke a few years back (he's doing ok). I'm enjoying being back in the vibrant UK music scene and currently play in a couple of local bands doing gigs around the local area, and I enjoy going to various music festivals with friends.

Work wise I've been working for a software start-up business, and I'm also currently exploring new work opportunities in London.

This weekend I'm flying out to Vancouver in Canada to visit my sister who lives out there.

So I can't complain really :)

Q. You started the first Moebius Facebook group in the UK. What prompted you to do that and what was it like connecting with others with Moebius in the beginning?

A. I did! I thought it might be nice to create a place for people with Moebius and their families to connect more easily and share knowledge and advice, and at the time there wasn't a group specific to the UK. As a rare bunch we need to stick together! :)

While I was in New Zealand I also connected with some members of the Australian and New Zealand Moebius community which was cool.

As I had an early diagnosis, my family and I had previously been along to some of the UK conferences which Linda Anderson used to run, so I've always had contact with other Moebians luckily, but it's been nice seeing the discussions develop and people helping each other out on the group.

Q. You're also a musician - what music do you play and what does it mean for you?

A. My main instrument is Drums, but I also play guitar and sing. I've always found music is a great way to meet and connect with new people. It's lots of fun playing it and seeing people's enjoyment of it. If I could smile it would put a big smile on my face :)

Q. What are your hopes for Moebius awareness in the future?

A. I hope with all the modern technology we have now, that more people with Moebius will be diagnosed early so they can get the help and support they need, and that the work you guys are doing to promote awareness helps to bring people with Moebius together.

Q. What would you say to parents whose child has recently received a diagnosis of Moebius Syndrome?

A. I would say the main thing is to just give as much love and support as you can. It is hard having a physical difference, but it doesn't need to get in their way. Encourage their passions and they will find their place in the world :)

...and also join my Moebius Syndrome UK Support Group on Facebook, if you are based in the UK :)