Ethan's Story

Hi, my name is Ethan and I am 5 years old. I have severe cerebral palsy, spastic quadriplegia/ dystonic type level 5. In other words physically I can’t do anything by myself, so my mum is typing this for me.

I was born at 26 weeks, weighing just 974g. I spent 5 months in hospital and was nearly 9 weeks old before my mum and dad could hold me for the first time. I have chronic lung disease and a moderate hearing loss too-but I understand everything everyone says to me. In fact I’m pretty smart.

I live with my mum, my dad and my little sister Hayley. She is small and very funny, and I love her to bits. We also have a dog, called Kelcie, and 3 fish called Dorothy, Henry and Wags (And yes I am a Wiggles fan too).

It takes a lot of people to help care for me, including family, friends, carers, therapists, doctors, teachers and a day care mum. I am very lucky to have lots of people who love me.

So how am I making a difference in the world today?

I have some very good friends, in fact some of them have known me for years. My friends treat me like everybody else. One of them was very surprised to learn that I didn’t talk, even after being with me at day care for 2 years. It never occurred to him that I don’t actually use clear words, as my eyes and facial expressions are so clearly communicated, and my friends always know exactly what I want, and when I want it-we just ‘talk’ in other ways. So I am teaching kids about individual differences and an acceptance that we may be different, but we can all be friends.

I have also helped lots of kids with CP get vital equipment needed, by being part of The Spastic Centres fundraising campaign this year. We had a camera for a week, and had to take photos of what a typical week might include. As it is usually pretty hectic, there were lots of photos. From day care to school to OT appointments to speech therapy to The Shepherd Centre to Westmead Hospital to Conductive Education to Sailability- life is pretty busy for our family-and sometimes all I want to do is watch a movie like Madagascar!

My mum and I also visit various high schools and talk to the students about living with a disability and about being resilient in life. We talk about what people with disabilities can do and the equipment and services they need. The students are often surprised to hear that I can move a power chair with a head switch and even use a computer with my eyes. I am trialling eye gaze computers at the moment, in the hope to own one very soon. Then when I know all my letters and words I will be able to type things like this myself. In fact my speech therapist thinks I may be the youngest child in Australia to do this!

One of the best things I have done though, is to be an inspiration to my new friend Justin White. He is 18 years old and also has CP. He is riding 45km to raise money for The Spastic Centre and to help me buy vital equipment. He doesn’t understand something though-he is My Inspiration and he has made a huge difference in my life so far. Thankyou Justin-I know we will be friends for life.