About

Hi,

You made it! I’m really happy to see you here!

My name is Leon, I am almost seven years old and a bit of a character if I’m honest.

My life has been a busy one, with lots of hospital visits and lots of doctors and genetics people poking and prodding, and sticking sharp things into me.

Why? You ask? You don’t look like there is anything wrong with you. I can hear you thinking it you know.¬†

Well, you are wrong. I have an unclassified syndrome. (That means that there is a genetic marker that starts with me and nobody has any kind of clue what will happen from here. There is no long-term prognosis as nobody  understands it yet. So here we are. Taking one day at a time. Enjoying life and making sure its lived to the absolute max.

As part of my syndrome I have epilepsy (with two different kinds of seizure… How lucky am I?) and autism. As well as other stuff like sensory processing disorder and a heart murmur, rubbish reflexes, floppy limb tone etc etc. The list goes on and on. I also suffer from Multi suture Craniosynostosis. What do you mean you have never heard of it? Actually, you won’t be on your own…Lots of people don’t know about it so I will do my best to educate you.

You may be thinking that I’m pretty good at words and stuff for an almost 7-year-old. Well, I will let you into a little secret. I can’t read or write so Mummy has to do all this work for me.

Anyway, I’m glad you are here. Have a look around and if you want to know anything more you can contact me.