This is by far the most difficult ride report I’ve written, and one that I’d prefer not to be doing. But it was a worthwhile ride, and no less worthy of a write-up. This is for my niece, Allegra Rose Patty.
An unfortunate thing about living in Darwin is that travelling to basically anywhere else in Australia is tedious and expensive. As such, it’s a good idea to plan ahead and prioritise. Weddings, races, holidays – you can set up a calendar and book early. However, sometimes things come up and you have to drop everything and go. On a Thursday night, a Facebook update alerted me to the news that my niece, Ally, had had another seizure and been admitted to the RCH. Worry as I might, she has usually come good and things settle down. This time was different. This time I went to bed worried – more updates were looking negative. And then the phone rang.
There was nothing to be done. Ally had little time left and I could feel my family back in Melbourne starting to make preparations. I was stuck in Darwin for the time being, not in Melbourne to comfort a sister who I was closer to than anyone else in the world as a teenager. It was exceptionally shit. Worse than myself, my eldest sister was on holiday in France, even more disconnected from home. Sad, guilty, helpless and wrong – so many feelings that nobody wants to have, but you have to at points in your life.
Ally’s mum, Marissa, has been a big supporter of the crazier rides I’ve completed. She came and watched a few laps of the double everesting I rode in December 2015, and had often hinted at me fundraising for Dravet syndrome, the condition that Ally had been diagnosed with. With that in mind, I felt obliged to do another ride without my usual selfishness, and ride in memory of Ally whilst trying to raise money and awareness for Dravet syndrome. Marissa agreed that this would be a good thing to do, and I was happy to hear that she quickly spread the word amongst family and friends. It was a small thing for me to organise, and something I could start preparing in Darwin, so quickly a page was set up explaining the event, and where people could donate and find out more about Dravet syndrome.