At midnight on Sunday, Cloverdale Maddie Milton began a 50-kilometre run that would take her through the night.
She ran to honour five young West Australians who died too soon.
The 33-year-old ran through the night at the Light Horse Ultra in Perth’s northern suburbs in honour of her cousin Evie, who died at just 15, and four other young West Australians lost to Sudden Unexpected Death in Epilepsy (SUDEP).
Each 10-kilometre leg was dedicated to Daniel, Chelsea, Jasmine, Whitney and Evie.
“Honestly, it felt incredible,” Maddie said.
“Being my second ultra in 15 months I knew what was ahead of me in terms of the distance but this time it felt a lot more special. With every km that ticked over it felt like they were all there with me carrying me forward even with the rough conditions of the course itself and the weather.”
The weather tested her resolve, with heavy rain the day before leaving the track waterlogged. “It had rained a lot the day before and created some major ‘puddles’ along the back part of the course which meant soaked feet and I now consider myself part duck,” she said.
Running overnight also presented new challenges.
“I have never run overnight before so learning to pace myself being 12 hours of running and listening to my support crew was also a bit of a challenge, we had to change the strategy early on which meant checking in every lap to eat, rest and stay hydrated.”
But there were uplifting moments too. “Having Emma B come and watch me start the race itself, having some of my closest friends and family be support crew, supplying an endless amount of encouragement, giggles and motivation to keep me going. Another uplifting moment was watching all the other runners, we all had our reasons for being there but I love being part of the ultra-running community and the comradery it brings.”
Through the darkest hours of the night, Maddie drew strength from her cousin. “I also kept coming back to thinking about Evie. I knew that she would be proud of me and her spirit kept me going well into the night.”
What mattered most to Maddie was raising awareness on epilepsy and SUDEP. “That it needs to be talked about more and more awareness about epilepsy and SUDEP needs to be brought to light. Not knowing what SUDEP was until we lost Evie, I want to raise more awareness around it and what it is.”
According to her, the support she received carried her through. “More than I could ever put into words. To the families of Daniel, Chelsea, Jasmine and Whitney, it meant the world to me to have their support as we got closer to this and on race day itself. To my own family, the unwavering and unconditional support and love I felt throughout this whole journey and keeping Evie’s memory strong is something I do not take for granted and it backed me the whole way.”
Epilepsy WA CEO Emma Buitendag said Maddie’s run meant a great deal to the charity and the families she honoured.
“Epilepsy WA is deeply grateful for Maddie’s generosity in dedicating her 58km ultramarathon to five young Western Australians lost to SUDEP,” she said. “Her fundraising helps us continue vital services such as support groups, our hotline, and epilepsy resources. Maddie’s tribute is especially meaningful to her own family, having lost her 15-year-old cousin to SUDEP, and brings comfort to the families of those she honoured.”
Mrs Buitendag said community events like Maddie’s run are priceless. “We are so grateful when people like Maddie support our work and draw attention to the battles people face with epilepsy, it means we can help fund important initiatives to reduce risk of harm and injury from epilepsy such as our Seizure Safety Month held in October each year. Increased awareness is much needed. It is priceless and will help save lives.”
She added that Maddie had helped bring epilepsy out of the shadows, noting that “people often hide their diagnosis of epilepsy and the fact that they experience seizures as they fear stigma and discrimination.”
Epilepsy WA CEO, however, explained that “the more we talk about it the easier it is for people to be more open about their epilepsy, and to make the whole WA community and our decision makers realise that it is a serious disorder, and that Sudden Unexpected Death in Epilepsy can tragically be a reality for some.”
Epilepsy WA continues to run support groups across the state, provide first aid training, and advocate for families living with epilepsy. Information and resources can be found at www.epilepsywa.asn.au.
