We are all individuals. We are born as individuals and we leave this world as individuals.

Throughout our lives, we share similar journeys with other people, which is comforting and makes us feel less alone. Sharing a journey, no matter how long it lasts, can offer the chance to share experiences and to support each other; as well as draw on other’s experiences.  Many of life’s journeys are common ones, such as becoming a parent or the experience of your first day at school. 

But some are less common and we need to travel these paths alone. That is particularly the case when you suffer from a rare medical condition. However, we are still individuals living the life that is laid out for each one of us. No two people’s journeys are ever the same. One’s personal journey through life is just that. Personal!  I don’t mean personal as in private but personal in that it is individual to just you.  

I suffer from a rare medical condition called Hunter syndrome - also known as mucopolysaccharidosis type 2 (MPSII) - and while I certainly don’t have the most severe case, it’s also not the mildest.

Two of my three brothers were diagnosed with the disease at the same time I was. 

I know I’m not the first and only to be diagnosed with a rare and life-limiting condition, and I’m not the first and only to overcome ongoing physical and emotional obstacles on an almost daily basis.

I am legally blind. My eyesight isn’t the worst but it certainly isn’t the best.

I didn’t have the most agonising school years of any Australian school boy, but I know I certainly didn’t have the most enjoyable ones either.

I’m sure I don’t suffer from the worst case of self-consciousness or social awkwardness, although it certainly feels that way at times.

I’m not the only one that faces an uncertain future, after all none of us are promised a tomorrow.  

I suffer from a long list of medical conditions but probably not as many as some.

But one thing that I am 100% certain of is that I am the only one who knows what it is like to be me. 

I’m sure there are many more colourful and fascinating life journeys than mine but they aren’t mine. I only know what I know. My only experiences are what I have personally experienced.

 I am me and this website is an insight into my journey.