I was born in Melbourne in 1994, which is a beautiful city. I have a stepbrother and a sister and I am the eldest. While at primary school, I was like every other kid and had no signs of HSP.
In my last years at high school I enjoyed Media and Studio Art. For my final work in Studio Art in year 12 I made a photography book that I am very proud of. I have just graduated from high school at Preshil, Margaret Lyttle Memorial School in 2012.
I am a big fan of Australian Rules football and support the Melbourne Football Club. I used to learn with my friends to play tennis when I was about 16 years old. I enjoyed playing in my local Australian rules sports leagues when I was around the age of 12 – 14 years old. In my later years at senior school I began to explore filmmaking and photography. I enjoyed going out and making films rather than sitting in class and doing theory work. My favourite directors include Martin Scorsese who made Good Fellas and Taxi Driver and Paul Thomas Anderson who directed Magnolia and Boogie Nights.
I thought I wouldn’t have any health troubles until I was older. However, my parents began seeing toe walking and didn’t think anything of it at the time when I was 10 or 11 years old but in 2012, my parents, teachers and students noticed me limping. I was also sedentary in my final of school. No one was aware of the reason behind it and I could still play basketball and tennis at school, I could still run and jump. I begun to see a couple of doctors as something wasn’t right and was referred to the Royal Talbot at the end of the 2012 and shortly after I was diagnosed with HSP. I have an awkward slow gait. I am still trying to stay active with attending the local gym. I am the only identified family member with this condition. I have attended physiotherapy and have maintained doing general stretches every morning.
I am now studying the Advanced Diploma of Screen and Media at RMIT in the city following my interests from high school. I am planning my end of year film, which is a prequel to the character in my upcoming web series I am making. Check out the webseries page at https://www.facebook.com/powerlesswebseries and share it with your friends to help this project reach as many people as it can.
Alastair, I showed the same symptoms at the same time in my life. I live in the United States. I am a divorced male with 2 children. No one in my family has had this disease. My son is 14 and my daughter is 12 and thankfully they have shown no signs. I am now 49. I am on permanent disability. I use ski poles and leg braces to keep me mobile. I am still able to drive and live unassisted. As my disease progressed I was an Elementary Physical Education Teacher. For 15yrs. I moved to the classroom and taught health 5yrs before Disability.