Have you ever met someone just once and been so blown away by them that they will stick in your mind forever? That’s exactly what happened to me when I met Chris, my friend Jen’s son. Chris was one of the most positive people I’d ever met. I had seen him on television before I met him. He was interviewed on a current affairs program and I remember being in awe of him then. That feeling of awe continued once I met him. He truly was awesome. (be warned. you’ll hear awesome, inspirational, amazing and fantastic a lot through this post)
Chris was born with Progeria which is also known as Hutchinson-Gilford Progeria Syndrome (HGPS). It is a rare, fatal genetic condition of accelerated ageing in children. Children with Progeria die of the same heart disease which affects millions of normal ageing adults (arteriosclerosis), but at an average age of just 14 years. Their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.
Let me tell you, regardless of the toll it took on his body, Chris didn’t let anything stop him from living his life to the full. He was intelligent, funny, thoughtful and incredibly inspirational. Chris knew that his quantity of life would be short but he preferred to concentrate on his quality of life. And boy, did he make sure it was action packed.
Chris was a member of the Royal Children’s Hospital ChIPS (Chronic Illness Peer Support) program. He joined ChIPS in 1997, and shortly after it proved impossible to find anybody who didn’t know him, or at least know of him! Chris was once said to be the heart of the ChIPS community, attending all the social events and reference committee meetings he could, whilst always making the effort to introduce himself to new people and befriend as many Chippers as possible. One of the highlights for Chris was the annual ChIPS camp, which he took delight in organizing and participating in. Chris won the first ever Walsh Perpetual Trophy and proved to be a very competitive team leader, trying his hardest at every camp to win it back. The Chris Balnaves award for Most Outstanding Camper was created to honour and remember Chris for who he was, and his dedicated contribution to ChIPS and the spirit of the program.
Sadly, Chris passed away in 2003, just 6 weeks short of his 21st birthday. It’s a testament to the person he was, that his funeral was such a celebration of life. I can never hear Cold Chisel’s, Khe Sanh without thinking of him, as it was belting out loud and proud at the conclusion of his funeral service, I’m sure reminiscent of how it was played by Chris when he was tootling along in his much loved car. People from all walks of life turned up to help his family, parents, Jen & Murray and sister Merryn, celebrate such an amazing and inspirational life. The most memorable thing for me, was the humour that surrounded such a sad day. It was very obvious from everyone who attended, that Chris really loved to laugh.
Tomorrow, April 17th, is Hats On for Progeria Day. We are encouraged to wear a fun, crazy hat and show our support of PRF (Progeria Research Foundation). So how to do it? It’s easy: Wear a hat (the crazier the better), take a photo, share it on your social media pages using #HatsOnProgeria, and make a donation (any amount helps reach the goal) http://prf.donorpages.com/HatsONDAY/
When you click on the link, you can also start your own fundraising page and raise money with your friends online–So why not sign up today! If everyone in your office or place of work wore a hat for Progeria and donated a gold coin, it will help fund research as well as support kids with Progeria.
PRF is a world wide fundraiser originating from Boston USA. There are approx 170 children throughout the world diagnosed, and Progeria Research Foundation have two objectives. One is to find every child in the world with this condition , The other is to research the best methodology of treatment. You might already know that children fly into Boston from all over the world for trial treatment now. PRF fund raise to fly them in, provide accommodation for themselves and their family member plus their treatment, which in some cases is working to improve their cardiac and respiratory conditions.
I intend to wear a hat tomorrow in honour of Chris. I’ll post a photo on here tomorrow to show you what I’m wearing. I really do hope you can do the same. Feel free to post your photos of you in your crazy hats in the comments. I know Chris would get a laugh out of them and I’d love to see them. Let’s get behind this fantastic cause. Together, we WILL find the cure!