Lately I have had a few people say they are sorry to hear I have CHARGE syndrome. That upsets me because I was born the way I am.

I dont mind if someone says they are sorry I am in pain, but it is hard when people are sad for me being a bit different.

I also hate when people say I will be healed, because you can’t heal genetics. If you could, I would have been healed before mum even had me.

I feel people should look at the things we can do. This helps people to feel better about themselves to. People also need to understand disability better.

This is one of the reasons I like to spread awareness about CHARGE syndrome, to help others understand more about my rare condition and to spread awareness.