Living Duchenne: Meet Chris Gillin! A Living Abled Takeover.

G’day everyone and welcome to another blog post! I have mentioned a few times about my friend who has Duchenne Muscular Dystrophy, and I thought it would be good for you to all know a little bit about what life is like for someone living with a more extreme form of MD. So I will now let my best mate Chris Gillin take over! (warning: language).

Hi everyone, My name is Christopher, but you can call me Chris, I am 32, hail from Warrnambool Victoria, Australia, and I happen to be diagnosed with Duchenne Muscular Dystrophy.

I was diagnosed with Duchenne Muscular Dystrophy when I was about 4 years old, I don’t really have any memories of that time but as I got older I started finding out more & more about this disease & how it would affect my life. I remember the day I found out about the life expectancy the comes with Duchenne. At that point in time, the expectancy was in the mid 20s.

That was an extremely tough day but luckily I have amazing parents that got me & my late brother Aaron through that tough time. Their love, encouragement & positive attitude guided us through that time, they really changed our perspective on how to look at a very serious side of this condition. As a family we decided then & there to not count the days but to make the days count, a motto we still live by to this day.

Duchenne Muscular Dystrophy is the most common form of Muscular Dystrophy it affects 1 in 3500 males & in rare cases, 1 in 50 million females. Duchenne Muscular Dystrophy progresses slowly yet eventually involves all voluntary muscles, affecting the heart & breathing muscles in later stages. A wheelchair is required by about age 8-11 years, with a current average life expectancy of 26.

An aerial pic of Chris in his electric wheelchair smiling up at the camera and a sprint car with a big Muscular Dystrophy Awareness Warrnambool sticker on the roof.

 Living with Duchenne is very difficult, both physically as well as mentally. As you can probably tell, the physical side is extremely hard, it progresses slowly but at the same time things feel like they can change quickly.

The mental side is just as hard, constantly having a ticking time bomb dangling above my head is shit but I’ve also had to grieve each time Duchenne progressed further, taking something else away from me to make my life even harder. I’ve also had to attend funerals for my cousins Ben & Zach, who lost their Duchenne battles. I’ve watched my younger brother suffer for many years before losing his life to this terrible disease.

I know this will be my fate sooner rather than later, I’m 32 so i’ve already out lived the average. I’m not going to lie, I have my tough days but I refuse to live my life fear or anger, I choose to be positive & enjoy my life. I don’t know how long I have left but I won’t waste my precious time counting the days, I will continue making the days count.

Living with Duchenne is very difficult, I’m sure it is a lonely road for some but I was lucky enough to have a younger brother fighting the same battle. I would rather that he never had Duchenne, in fact I would have been willing to give anything to change that for him but unfortunately that’s not how life works. It was nice that Aaron truly understood what I was going through & I truly understood what he was going through. 

a photo of Chris and his late brother Azza. Azza is in a grey tea shirt, navy pants, dark blonde hair and glasses in an electric wheelchair. Chris is on the right in a white printed t-shirt and black pants and light blond hair in a wheelchair. Both are smiling at the camera

I am grateful for how close we were. I am grateful to have him beside me every step of the way. I am grateful for all the concerts, wrestling events, holidays & footy games we experienced together. Most of all I am grateful for all the time we got to spend together, we didn’t even have to be doing anything, some of our best times were had just watching TV together. I am grateful that he was alongside me when we decided to form Muscular Dystrophy Awareness Warrnambool to make a real difference in the lives of other people suffering from Duchenne Muscular Dystrophy. I am extremely proud of the work we started together. Unfortunately, Aaron passed away in October 2017 aged 24 but this hasn’t stopped the Fight For A Cure. I now fight in his honour, hopefully I am making him proud.

Muscular Dystrophy Awareness Warrnambool was founded in 2016 by me & my late younger brother Aaron with the sole aim of raising as much money & awareness as possible to help find a cure for future generations well aware it was too late for us. Awareness & money is raised by selling merchandise, sponsorship & holding fundraising events. Up until February 2020 our family run team raised over $150,000. Unfortunately, Aaron passed away in October 2017 aged 24 but this hasn’t stopped the Fight For A Cure.

In February 2020 The Gillin Boys Foundation Muscular Dystrophy Awareness Warrnambool was founded. Being a registered foundation & endorsed Deductible Gift Recipient allows us to spread awareness & raise much needed funds on a larger scale. Since the change roughly another $310,000 has been raised that goes directly to research & clinical trials. Within the past 12 months we have made a $40,000 donation to the Royal Children’s Hospital Neuromuscular Clinic, $50,000 to the Murdoch Children’s Research Institute & by the time you read this letter we would have just made a $100,000 donation to the Murdoch Children’s Research Institute!

It is so rewarding to see how far the foundation has come. From humble beginnings we have been able to grow the foundation to the point we are now able to make a massive difference in the Fight For A Cure, fingers crossed we are getting closer to a world without Duchenne Muscular Dystrophy.

Chris wearing glasses and a black MD Warrnambool collared shirt with the hashtag one lace at a time on the shirt with the Gillin Boys logo and he is sitting in his wheelchair

You may also be wondering how Rhi and I met. Although I haven’t physically met Rhi yet we have been able to form a close friendship & rely on each other quite a lot. I reached out to Rhi after listening to her episode on Dylan Alcott’s ‘Listenable’ podcast in April 2021. I’m usually quite a shy & reserved person but after listening to Rhi I realised we have very similar personalities & the same attitude towards our conditions so I decided I would reach out via Instagram. Ever since then we have messaged each other pretty much every day. She has been amazing for my mental health, I have plenty of good friends but just like when I still had Azza it is nice to have someone to talk to that fully understands what it is like to be disabled, we may not face the exact same problems but we have an understanding, I am extremely grateful to have Rhi in my life.

Rhi asked me about how I view life. My life has plenty of meaning & purpose. I love my life. I’m not going to lie, sometimes it is a bit scary knowing that I am closer to the end of my life & sometimes it does get to me but in those times I reach out to my support network or refer to our family motto ‘Don’t count the days, make the days count.’ If I could I still wouldn’t change a thing about my life, sure having a life expectancy hanging over my head is shit but as I have proven as well as many others have proven it’s not a sure thing especially with so many advances in technology. 

I feel like I was put on this earth to make a difference & to inspire others, I really hope I have done that & I really hope that I have made everyone proud. I promise to continue defying the odds & keep living each day to the fullest. I also really enjoy proving the experts or the average numbers wrong. The people that know me well know that these things just make me even more determined to keep fighting, I’ve always done things my way & I will continue doing things my way. Duchenne may dictate my life but it WILL NOT define my life.

Chris with the AFL premiership trophy he is smiling at the camera.

If I could go back in time to give myself words of wisdom I would say your life will be tough but you are strong enough to survive it, chase your dreams & don’t let anything stop you achieving those dreams.

If you would like more information about The Gillin Boys Foundation & what we do, check out our website, social media pages or feel free to send me an email.

Website ☞

Facebook ☞

Instagram ☞

Email ☞

3 thoughts on “Living Duchenne: Meet Chris Gillin! A Living Abled Takeover.”

  1. Linda Apelt.

    You will always inspire people in all walks of life to always fight for each day you have. The world is a better place with you in it. Such a good read.

  2. Very well written, like everything else you write. You are inspiring. Your attitude to life with DMD is amazing and I certainly admire you and your commitment to raise money to help the next generations.

  3. Pingback: Sacrifice and Disability - Living Abled

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.