Along with my two younger sisters, I grew up on our family property in Central Victoria. We attended the local school where I was involved in many activities such as skiing, ballet and, of course, my great love horse riding. But, unlike my sisters, I have serious health problems.
I was born with a very rare congenital disorder called glycosylation (CDG). This affects muscles throughout my body, which causes severe physical disability and results in many complex medical problems.
There are only about 700 known cases of CDG world-wide. At present, the associated medical problems are not yet well understood and there isn’t a cure, but research continues.
Living with CDG means I have very little balance, poor muscle condition, my hands tremor and I have progressive vision impairment, which is becoming a big challenge for me, especially in when I’m riding. As well as a number of other medical problems, I am unable to stand or walk independently, which is why I need a wheel chair to get about.
During my teens, I spent three years immobilised in a metal brace from my hips to under my chin to try to slow progressive spinal problems. I was unable to ride during this time but in January 2010 I returned to riding and within the year started competing in FEI Para-Dressage.
My speech is also severely affected and it is difficult for me to speak and respond quickly. I often use a Lightwriter®, which is a small text-to-speech device similar to that used by the late Professor Stephen Hawking, but because I need to type what I want to say, the tremors in my hands can make this slow and difficult. I can speak but it is slow and I can be a bit difficult to understand.
I have undergone many orthopaedic surgeries and many hospitalisations.
Nevertheless, I have a positive outlook on life.