My sister, Sienna, was born in 2008 and was later diagnosed with a genetic disease called Spinal Muscular Atrophy (SMA). I was only three when she was born and four when we first began going to Bear Cottage.  

Sienna was diagnosed with SMA when she was around 5 months old after my parents noticed she wasn’t hitting the targeted milestones for her age - the biggest one being holding her head up on her own.  

Mum and Dad found out about Bear Cottage through our social worker at Sydney Children’s Hospital, Randwick, and that is when our journey began. 

My sister was a very bubbly and humorous little girl. Although being mostly non-verbal and paralysed, she was still able to laugh, be cheeky and have fun with the rest of the family. My relationship with my sister was strong and her condition didn’t have much effect on our relationship. I have my parents to thank for that as they always made sure I was able to adapt the things I wanted to do to her abilities.  

Contrary to what people may think, a lot of my best memories with my sister were at Bear Cottage. Whether it was Sienna playing with the air hose and making bubbles in her baths, playing with the sensory toys, making art, going to the snow or camping trips together.  

However, my favourite memory of her is when we used to play Mario Kart together, and by together, I mean, I was playing the game, and she was holding a controller thinking she was playing the game. Somehow, she still won – don’t know how that happened?  

My sister was two when she passed away. It was, and still is, one of the hardest moments of my life. However, the support Bear Cottage gave to not only myself, but the rest of my family, was incredible. 

Being part of the Bear Cottage family for as long as I have, has brought some amazing experiences and helped build lifelong friendships and strong connections with people who truly understand you.  

The memories from when I was a kid are faded, however the memories I have made as I’ve grown up are very much embedded in my memory. From the Bear Cottage Junior Sibling Camps when I was eight, to the Senior Siblings camps that I attended from the time I was 13 until I was 18. One of the fondest memories I have at senior camp was getting all the beds from the bedroom and putting them in the living room to sleep all together These camps were some of the best times of my childhood and teen years and I still carry them with me to this day.  

My family and I still attend the Superhero and Christmas parties every year. At these parties we reconnect with friends we may not have seen for a while and just enjoy our time surrounded by the people we have the deepest connections with.  

As an adult, my experiences at Bear Cottage have shaped the way I see the world. They have taught me respect and inclusion and how to be grateful for the people I have in my life and the things I get to experience. 

It’s also helped me build connections with not only people my age who have also lost siblings but connections with the therapists and nurses that I continue to talk to and catch up with regularly. 

There really is no other place like Bear Cottage.  Some would say its magical and I agree – but to me it’s a home, a safe place, a support system, a family.