My name is Eden Schembri and I’m a four year old boy living in Victoria, Australia who has Nemaline Myopathy, it’s a genetic condition which causes severe muscle weakness. I’m cared for by mum and dad, (Emma and Evan), and a small group of carers, ordinary people who are trained by the Royal Children’s Hospital to care for me during the night.

Me shortly after birth

My dad and I at 9 months after birth

 
I’m fully ventilated through a tracheostomy as my condition inhibits my ability to breathe and swallow and I’m totally dependent on my wheelchair. I’m also fed via a gastrostomy so that my food doesn't go in to my lungs instead of my tummy, but even though I'm not allowed to eat, I love to have a little taste of what mum and dad are eating. I often require suctioning in my tracheostomy to clear my airway of secretions, especially when I try to breathe without the ventilator. I can probably breathe for about half an hour on my own. Even though I can make a lot of noise I find it difficult to speak clearly, so I communicate through sign language and I am learning how to use an electronic communication aid.This year I have started Kindergarten three days a week where I have made many new friends, I enjoy painting, going on the see-saw and racing the kids on the bikes in my chair. I also attend Yooralla kinda once a week where I receive physiotherapy and speech and occupational therapy, p.s. I love to see the look on all the faces when I show them how much I’m progressing.

Yooralla is fun!

I love werribee zoo!

I exercise every morning by performing a variety of stretches and yoga poses before spending some time in a standing frame. This frame supports me in a standing position and while in this frame I like to play games on the computer and surf the net all by myself! My favourite hobby is playing with my vast collection of wild animals. I also love going shopping (for more wild animals), going to the zoo, and watching TV shows and movies, usually about wild animals!, and playing games on the wii.