1. Question: Tell us a little bit about yourself.
Answer: I’m 19 and live in Australia. I love reading, writing, drawing, cooking, boxing and playing soccer.
2. Question: At what age did you realize you were different than the other kids (or had your parents always discussed Moebius Syndrome with you)?
Answer: I suppose it would have been some time during primary school. I had my first smile surgery when I was about seven, and I guess that would have forced me to understand that I was different. My parents have always discussed Moebius openly with me and I think that’s helped me to accept my difference a lot more easily.
3. Question: Are you worried if you ever have a child of your own that he or she would have Moebius Syndrome?
Answer: I used to worry about having a child with Moebius Syndrome, particularly because I didn’t want them to go through such bullying or intolerance as I have been through. I try to keep an open mind – if I had children I know I would love them and accept them regardless of whether or not they had Moebius or any other condition.
4. Question: Do you think having Moebius Syndrome limits your ability to achieve your dreams?
Answer: I try not to let Moebius limit me too much. It was harder for me when I was younger because I was very conscious of my condition. I hesitated and shied away from a lot of things because I worried that people would notice my condition and then insult me or judge me. I think this hesitation is part of the reason why I’m shy nowadays. I try to take more risks now and not to let my dreams be crushed by Moebius – I consider my condition in many things I do and try to make decisions which accommodate it. I believe we can all achieve anything we put our minds to, and that instead of letting challenges like Moebius stop us from achieving our goals and dreams, we should try to incorporate them into our dreams.
Moebius Syndrome is an important part of my life, but it doesn’t define me. Accepting this, being able to see myself beyond my condition – and thus enabling others to do the same – is a dream which I am proud to say I am achieving.
5. Question: How do you think having a Moebius Syndrome Awareness Day will help people who have it?
Answer: I think having a Moebius Syndrome Awareness Day would be absolutely amazing!! I only really gained information about Moebius when I was about thirteen or so, and I remember the information I found was quite limited and repetitive. I didn’t know anyone else with Moebius and desperately wanted to connect with or even meet others like myself. I believe a Moebius Syndrome Awareness Day would not only provide people with Moebius with more information but would allow them to connect with others more easily.
6, Questions: Are doctors and other medical professionals in Australia familiar with Moebius Syndrome?
Answer: Not all. I was diagnosed with unilateral Moebius Syndrome quite early in life and have had surgery to give me some movement in the left side of my face. I have had to explain Moebius to some doctors and medical professionals but I think more are becoming aware of it.
7. Question: What advice would you offer to children on how to deal with the ups and downs of having Moebius Syndrome?
Answer: Everyone goes through tough times, but having Moebius Syndrome can make things a whole lot harder to deal with – and this is something we have to accept. There will always be ignorant people who can’t see past the exterior – try not to let them bring you down. Instead, appreciate yourself for the wonderful person you are, and for the strength and courage you need to live with conditions such as Moebius. Search for your smile, no matter how small it may be. Remember, a smile goes beyond the lips. Never forget or deny your own uniqueness, individuality and utter beauty. When you value and love yourself, it shows.
I’m not too sure who said this, but I think it’s a beautiful quote and one which really inspires me. "The first step in moving to a place to love others, is to move to a place in which you love yourself. You can't give to others what you cannot give to yourself. What you believe, you become".
8. Question: Would you say that Moebius Syndrome has been the most painful thing you’ve had to deal with in your life?
Answer: At times, yes. Although Moebius has been challenging and painful to deal with, it’s also made me who I am today. I definitely wouldn’t be the person I am if I didn’t have Moebius, and don’t think I’d ever want to change. I believe Moebius helps me to be more empathetic, compassionate and accepting. Surgery has been hard to go through, physically and mentally, and it’s made my condition more visible, but it’s made my life a lot easier. My face is more balanced in movement and I can now form a ‘smile’ on my left side – which, even though it’s lopsided, I love. It took me a while to accept that I’d always have Moebius and that there will always be people who won’t accept me for who I am, but I’ve come to accept it and to love it in a way, and I’m happy that I’ve been able to do that.
9. Question: If you were granted one Christmas wish that would benefit others with Moebius Syndrome, what would it be?
Answer: I think I’d ask for more than a cure, or for early detection. I think I’d wish for greater acceptance in the world today. I’d want people to be able to look past stereotypes and perceptions of outer beauty and instead be able to truly appreciate the inner beauty of others. Don’t let Moebius blind you to the fact that you are absolutely beautiful, inside and out. See your beauty and love it.
Wishing you all a happy, peaceful Christmas and a wonderful 2011.