The primary goal of this campaign is to raise awareness and fundraise for Rett Syndrome Association of Australia. Ava, my daughter, is a beautiful 14 year old girl – she is smart, cheeky and gifted, combining a huge smile with shining eyes that are completely alluring and she knows how to use them with anyone that meets her. Sadly, Ava was born with Rett Syndrome. As the effects of this devastating condition do not take hold until about 18 months of age, for the first 12 months of her life, Ava’s mother and I were completely oblivious to what was instore for Ava and our family in the years to come. In addition to this, Ava also suffered a spinal cord injury following surgery to correct her scoliosis in November 2020. Please feel free to read about ava’s surgery journey on the Ava’s Story Facebook page.
What is Rett Syndrome?
To picture a girl with Rett Syndrome, imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s and Epilepsy… all wrapped up in one little girl.
Rett Syndrome is a serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common.
Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.
We originally launched with the plan to have the concluding event of the campaign at the 2020 Ironman Port Macquarie. Though due to two cancellations of this event we are now in fact launching the campaign with the recently completed 2021 Ironman Cairns and running through to final fundraising auction event we will be launching in the next few months to be held early 2022.
I have found triathlon has helped me over the past 8 years in providing a great social and healthy outlet. I have completed in sprint and Olympic distance triathlons as well as a few Half Ironman distance events but until last week I’ve never completed or even attempted a Full Ironman distance triathlon… basically it was beyond my current capabilities. The race involved a 3.8km swim, 180km bike ride and 42.2km run.
Not for one second did I think that I couldn’t conquer this challenge. I’m lucky – this is just as much a mental sport as physical… and I have Ava, and I see the struggles she goes through every day. It puts the pain and doubts during training and racing into perspective, and I can drive forward. I also know that Ava is stronger, tougher and more resilient than I will ever be no matter what race I finish – She Is the True Ironman in our family – IRONAVA.
We have a goal to raise $10,000 for Rett Syndrome research before our 2022 event and then skies the limit. Every dollar raised will be donated to Rett Syndrome Association of Australia. This is an Australian based organization who have been involved in Rett Syndrome research since the 1990’s and are currently involved in some exciting medicinal trials.