Clare Stuart will be on the start line at IRONMAN® 70.3® Western Sydney triathlon on Sunday, racing for more than the glory of finishing.

Stuart, 35 from Orange, is one of four athletes racing to raise funds and awareness for Tuberous Sclerosis (TSC) Australia, a condition that receives no funding or ongoing government support and affects more than 2000 Australians.

A baby born with TSC has a 90 percent chance of developing epilepsy, 80 per cent chance of developing a disfiguring skin condition on their face, a 30 percent chance of profound intellectual disability and a 20 percent chance of developing a life-threatening brain tumour.

“My inspiration started with my little sister Lizzie. Lizzie was born with TSC and struggled with uncontrollable seizures, intellectual impairment, autism and polycystic kidney disease. TSC turned our family’s life upside down, but Lizzie was a champion through all of that and lived her life with friends, dancing and a wicked sense of humour. She died from kidney failure in 2010,” Stuart said. “My inspiration grew from my Mum’s leadership of Tuberous Sclerosis Australia. Sue Pinkerton was president of TSA for nearly 20 years and helped hundreds of Australian families living with TSC.”

Stuart is part of an all-female team and will complete the 1.9km swim portion of the event.

“In 2014 we had the first TSC Heroes team participate in a triathlon event and raise money for TSA. We were blown away by their success, and I vowed to join them at the next event. Lucky for me I’ve had a little time to train since then – and I have two wonderful friends making up my all girls’ team, so I luckily only have to do the swim,” she said. “The rest of the team are a great bunch of guys and girls, all of whom are inspired by someone they know with TSC.”

For the team of athletes testing themselves physically, what the families of those with TSC go through every day will keep them moving forward when the going gets tough.

“I’ll be inspired by the families that live with TSC who often describe it as treading water – not knowing when the next current will pull you under or when the next wave will crash on top of you. For the kids with TSC, their life is punctuated with hospital visits, invasive tests, scary surgeries and disabling seizures. If they can survive each day with all that, I can keep swimming,” she said.

For more information check out the website for more about the team.