Give a gift to a young person like me this Christmas

I think we can all agree that 2021 wasn’t a great year. Covid 19 really limited our movements, brought periods of isolation, and fears for the future. But that’s a lot like every other year for someone like me with muscular dystrophy. Still, I have a lot to be grateful for.

My name is Kobe, I’m 20 years old and live in a small rural area called Jaspers Brush, 2 hours south of Sydney. I don’t know anyone who lives close by with muscular dystrophy, so when I joined Muscular Dystrophy NSW’s (MDNSW) Summer Camp in 2013 it opened up my world. Initially, it was daunting to leave my family, but camp quickly became one of the only
places where everything felt normal.

At camp I noticed most kids didn’t even talk about living with MD because it was something we all shared, so we didn’t need to explain ourselves. This was a time I could just have fun, and the incredible memories and best friends kept me going back every year.


Since aging out of Summer Camp I’ve looked forward to seeing my mates at the annual MDNSW Young Adults Weekend. We didn’t get to meet up in 2020, so I was grateful to catch up in the Hunter Valley in March. It felt great to travel, learn some independent living skills and eat some cheese from the Smelly Cheese Shop, which wasn’t even that smelly! The best part was being surrounded by my friends, mates who just get each other. When we’re together it’s like our situation doesn’t matter; we play games and just be ourselves.

Throughout the pandemic it’s been difficult to stay connected. Which made me grateful that MDNSW created an online group called the Power Hour for all of us guys in power wheelchairs to catch up virtually every fortnight. It’s a chance for people in the same boat to hang out, just the guys, and have some light-hearted fun…including a few bad jokes! It’s also a place where we feel safe to share our feelings. Having MDNSW adapt their programs online was especially important to me as I live in a rural area and worry about missing out. Power Hour also motivated my mates to show up, and we even had a friend living in Europe dial in! During the toughest lockdowns we asked to increase our fortnightly sessions to weekly, and it became the time I look forward to the most.

My family and I benefit enormously from the programs offered by MDNSW, and I know many others do too. Christmas is a time for generosity and I’d like to ask you to consider giving the gift of a donation. You will be helping to provide life-changing programs for kids, adults and young people like me with muscular dystrophy. Your donation will give meaningful life-long connections and support when it’s needed most.

Next year will hopefully be better for many of us as the restrictions lift, but one thing I know for certain will stay the same is the strong community and support from MDNSW, which is made possible by your generous donation. I hope this is a very special holiday season for you and your loved ones and that it’s a time to connect and come together. Thank you for donating and helping our MD community do the same.

With gratitude,


Click here to donate and support people just like Kobe living with Muscular Dystrophy.