I am the fourth generation in my family to carry the NOP56 gene expansion resulting in an earlier than anticipated onset of Spinocerebellar Ataxia Type 36 (SCA36). I was formally diagnosed in 2020 at age 46 although, I had been experiencing or noticing slight changes in my movement and balance, as well as small speech changes since 2014.
After I was given the formal diagnosis of SCA36, I became depressed and sad about what is ahead for my three teenage children and what their futures will hold. They each have a 50% chance that I have passed the gene mutation on. Unfortunately, they are unable to be genetically tested until they are 18 years old, so we are unable to determine whether they have SCA36 as well.
A disability support worker noticed my extreme lack of wanting to participate in life. She asked, “What are your goals?” After much consideration, I said, “To ride a horse again”. I grew up on the back of horses from three to 22 years old. She found a coach and a pathway for me to ride again with support. I needed a ‘purpose’ again and something to keep me wanting to live life.
In August 2021 I finally sat and walked around on the back of a beautiful Quarter Horse called Sissy. After my first lesson, I felt free, calm and excited for the future. I began riding twice a week with my new para team and by December 2020, I entered the State Quarter Horse Championships and won four state titles and was awarded the Equestrians with Disabilities (EWD) Overall Highpoint Champion.
Three months later and currently, I have achieved 19 first places, nine second places, eight State Championship titles and 3 EWD Highpoint Championships. I competed in April 2022 at the Australian Quarter Horse Association (AQHA) National Championships, winning a EWD National Trail title and backing it up with an Australian Reining National Reserve Championship in July 2022.
I have recently commenced more training in a different discipline (Para Dressage). Through Paralympics Australia, I have also found a coach and pathway to commence my training and competition schedule towards Fédération Équestre Internationale (FEI) classifications and qualifiers. This training would enable me to compete at the World Equestrian Games and fingers-crossed, the Los Angeles Paralympic Games in 2028.
People living with ataxia can qualify to be Paralympians. If you are interested in competing, call your country’s Paralympics organisation and ask to speak with a Pathway Coordinator to connect you with the world’s best coaches and facilities. Reconnect with your past sporting passions.
Equine sport and therapy has given me purpose. It frees my soul, heals my heart, engages my body and challenges my mind. Rare is many, strong and proud!
Please check the Rare Disease page(s) for related Support Organisation(s)