My brother was one in a million. Literally.
Many of those who watched my TEDx Talk wanted to know more about my brother so I thought I’d write a little more about him here. My brother, Gaelon, was born with Xeroderma pigmentosum (or XP for short). It’s a very rare skin condition that basically means the skin cannot protect or heal itself from exposure to ultraviolet light. While XP is still considered a terminal condition, many people diagnosed with it today can expect to live twenty or thirty years, some even longer, because we’ve gotten much better at finding ways to protect people from exposure and treat cancers as they occur.
When my brother was diagnosed, more than forty years ago, doctors in Western Australia knew next to nothing about it. My family had very little support and even less access to accurate information or tools or resources. Thankfully, with the flourishing global community available thanks to the internet wonderful support communities exist for people who face this condition today, and their families.
No one could imagine that this perfect little baby, playing out in the sun, would have a very rare genetic disorder that meant this moment was killing him.
But within a few more months it became evident on his skin that something was not quite right. I find it really interesting to look at this picture because the splotches on my brother’s face are so similar to the liver spots on the hand of the old man holding him.
School would always be a challenge. Although Gaelon was very different, the other kids at school were pretty awesome. But you can see, even in this photograph, that very little accomodations were made in the classroom to protect him from the light. You can see the sunlight through the windows behind him but you don’t see the fluorescent globes above his head. The bandage on his hand would have been from a recent surgery.
We would laugh and play and have a whole lot of fun. He was my big brother and I absolutely adored him.
And we’d ride our bikes all over the neighbourhood. Here you can see my brother in the middle. He’s wearing his gloves and the helmet and visor that shielded his face from the sun.
I’m the cute little blondie to his left with our mother behind me. On the opposite side are our sisters, Tracy and Amanda.
Gaelon was supposed to be covered, head to toe, when outside. On the swing, he should have worn his gloves but he didn’t always do what he should.
This is one of our whole family’s favourite photographs of Gaelon. It was at my mother’s wedding and it’s one of the rare occasions where he’s actively smiling for the camera.
My brother was very self-conscious about the way his condition made him look. As more of his face was damaged he came to actively dislike his appearance.
One of Gaelon’s greatest joys as a teenager and in his early twenties was getting to ride around on his motorbike. The motorbike helmet was easily overlooked by people and he could cruise around the neighbourhood.
At a wildlife park Gaelon got to hold not only this python but also a cute, cuddly koala.
These are some of the last photographs we have of Gaelon. On the left is Gaelon attending my wedding. In this photograph the nose you see is actually a prosthetic.
My daughter, Kaylie, loved spending time with her uncle. They’d watch T.V. together in his room which was set up with multiple screens and video game consoles. Kaylie was his first niece, my son, Gaelon’s nephew, was born a year after his death and he never had the chance to meet any of my sister’s children.
Gaelon passed away on the 23rd of March 2003 in his home. He was attended by his family. My mother, sisters and I had a chance to sit with him in his final hours and we waited for his passing, talking quietly together, until his last breaths. It was a calm, quiet passing. And a peaceful letting go.
I honestly feel very blessed to have known my brother. His life has shaped mine in so many ways. I wouldn’t give up a moment of the time I had with him. He is the reason I love video games and can share that passion with my children. The sound of motorbikes always bring him to mind with fond memories. And although we’re still very conscious of how dangerous the sun can be, I live in the light, because of him.