“How do you spell it”, what is Rett an abbreviation for?”, “I think it’s short for Turrets”. “We need a bigger book”. “You have to tell us about it”.
It’s 1.30am and I sit in a paediatric ward, in Tauranga New Zealand. It’s quiet now and the only voices are of the doctors and nurses asking those questions that have become all too familiar.
I keep telling myself we are not a third world country, but this disease, one which has taken over my life and the life of my wife and our little girl, is something of a mystery to these people. That disease is called Rett’s.
In their defence, it was a mystery to us too. Something we had never heard of. Something you and I don’t really want to hear of. It sneaks up on you, robbing our girls of their every potential, robbing us parents of dreams and replacing them with nightmares.
Once the frustration, fear and general bewilderment subside we are left with some of the most courageous children you are likely to meet. I don’t know a lot about this disease, but what I do know is that education is needed urgently, both in the public and health sectors of every day life.
In two years I have watched professionals at Starship confidently quote things like Global Developmental Delay, Autism and so on. Today I have seen every person from ambulance driver to pediatrician ask us, what is Retts, how do you spell it.
Aren’t we meant to be getting answers from them? In compiling this submission I have for weeks thought about what it would benefit, if successful. Today I found that answer, it is simply education. The more people who learn about this disease, the more chance we have of securing further funding in the future.
I revived my four year old daughter today. I know in years to come, I will have to possibly do this again… if I’m lucky. Help us find a cure for this monster by spreading our word of a daily struggle by the world’s silent angels.
Signed – A proud father
6 March 2006