Our People, Our Stories

Cassie and Tyler

Dec, 2021 | Our People, Our Stories

Hello to all our leukodystrophy families. My name is Cassie, and this is my son Tyler. Tyler was diagnosed with Metachromatic Leukodystrophy late infantile (MLD) when he was 2.5 years of age. He is now 10 years old, and the absolute apple of my eye.

It has been a dream of mine for years, to take Tyler to see the open spaces of our beautiful country, particulary Uluru. So I aimed to make it an adventure for my 30th birthday. People said to me, ‘You can’t travel with Tyler, it’s too hard. What if you need medical treatment in the outback?’ 

Well no, it is not hard to travel with my gorgeous son. I just made sure I packed more than I really needed, particularly water and medicine. There are GP’s and the Royal Flying Doctor Service, so there is medical care available in the outback! (Which we did need, Tyler must have been sick of driving, lol).

I began to organise our trip with my family in December 2020. I packed our wheelchair van to the brim, and we commenced our journey in June 2021. First we travelled through Western NSW, up into Queensland and across into the Northern Territory, destined to complete our journey to Uluru. Along the way to Uluru, we passed through and stayed at some amazing and interesting little towns. One of my favourites was Mount Ebenezer, a completely abandoned Roadhouse, that used to be fully functional, and is now left to ruin. Being there after reading the history was eerie, but fascinating. 

Most people were generous and wanting to know our story. It was an opportunity to raise awareness about MLD: Of course no one had heard of the condition, and I hope we made an impact on those we met.

At Yulara, (half an hours drive from and closest accommodation to Uluru) we stayed at the Emu Walk Apartments, where everyone was friendly and we had a great time. We absolutely loved walking around the base of Uluru. The difference in the rocks colour, the texture, the scenery, and different areas the Aboriginals used for women’s business and mens business. We were in awe of this most gorgeous and spiritual place. 

The entire trip took 5 weeks all up. We experienced almost every landscape our beautiful country has to offer.. even snow on our last night away!

 Would I travel with Tyler again? Absolutely! And who knows were our next journey will be.

Thanks for reading our adventure.


The parents and individuals who share their photos, videos and stories inspire us; they help us feel less alone on this journey.  If you’ve got something you wish to share please get in touch – we have a whole country of people who would love to hear from you.  Heartfelt thanks for your share.

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