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.

When Eden was born and we informed the doctors that we wished to bring Eden home, we were told that if he survived he would be unable to move and would spend all day staring at the ceiling. Well Eden has never stopped proving them wrong as he is an incredibly intelligent and happy four year old.

 
He is fantastic at using technology and is learning to use a communication device. He also loves to play games on the Nintendo wii and his portable playstation. This ability to use the “nunchuck” controller on the wii has helped Eden to prove his driving skills and he has been granted the funding for a motorized wheelchair. While this will provide him with much more independence we will be unable to transport his new chair in our car and as he is growing bigger and bigger we will also be unable to continue lifting him in and out of it. Therefore we have set up a charity for Eden to help raise funds for a vehicle that can be converted for a wheelchair as these cars and their conversions are very costly.

 
Our life with Eden is complicated and at times exhausting. A simple shopping trip can fill a whole day. However, Eden is such a pleasure and we enjoy every moment we share. Eden is an incredible little man who makes all the ordinary things in life something special. We consider ourselves to be truly blessed.

Hey everyone, I just wanted to show you all a video that I really like

After that song the Hippo got really hungry!