I have a rare movement disorder that causes my body involuntary movement. Its like being trapped in a body with no control of it. Its so rare that it doesn’t have a fancy name yet. Its just labelled as GNA01. This is the area that has the mutation. When I was diagnosed in 2015 I was number 7 in the world and now our little community has grown to 100 members worldwide.
My condition impacts my daily life in every aspect of it. I’ve spent my entire life moving. Because of my movement I am unable to walk, sit, or doing anything unassisted. I am non-verbal (although my expressions speak louder than words) I’m even battery operated. YEP! I even need to be charged 3 times a week. “That’s something not many can say!”
4 years ago life took a huge turn for me and I needed major brain surgery known as Deep Brain Stimulation (DBS). This saved my life and keeps me out of ICU. Last year I had a few issues and spent 3 months in hospital with 6 weeks of that in ICU as I developed an infection so needed brain surgery to have my DBS taken out while the infection cleared. In August 2018, I had the DBS put back in. My life without DBS would look very different to today.
Despite living trapped in my body that has a mind of its own, I’m HAPPY even though I suffer from pain, I still LAUGH even though my body is thrashing around. And I always SMILE even on my worst days. I fight hard everyday to live the best life I can.
I live on the Gold Coast with my mum and she provides all my care 24/7. Things are pretty tough for us because mum is unable to work and is not eligible for financial assistance here so relies on support of our community and organisations to keep us afloat.
I am rather tall and am very close to the roof of our van. It’s become very unsafe for mum to put me in the van as I am too tall for the entranceway and when in my chair my feet are touching mums elbows when she drives.
So mum is on mission to raise funds for a much-needed van that is suitable for me and my growth. This will be a van that will see me right through to adulthood. Without transport I am unable to get to school, my hospital appointments, therapies, and just living daily life.
We are reaching out and asking for your help to purchase my “FOREVER MOVING WHEELS”
Any donation even $2 is tax deductable which is great with the end of financial year fast approaching. You can claim it back all while helping mum get the perfect practical wheels for me.
Thank You in advance for the support. Whether you donate or just share with family and friends it all counts.