At the Overland Expo 2010, it was my pleasure to meet Phil Golden from Expedition-Awareness.org Phil will be undertaking a cross-country, back roads driving event to raise money for Adrenoleukodystrophy (ALD). I asked him to write an article about his upcoming adventure: what he’ll be doing and WHY he’ll be doing it.Read on!
Guest Author Phil Golden
When faced with the ultimate adversary, what do you do? Unfortunately, we are not comic book heroes wielding powers from another world. But in way, maybe we are. Maybe our super power is our ability to keep hope alive. To share with others our demons and them share with us in supporting the great fight.
Maybe we are super heroes.
When my wife and I learned that she could be a carrier for Adrenoleukodystrophy, a good friend and I began work immediately on Expedition Awareness. That was nine months ago. In those months that were to pass, we learned my wife was indeed a carrier of ALD and this past January, we learned my son does have the disease.
Adrenoleukodystrophy is a terrible disease that affects little boys. It attacks the insulating sheath around the nervous tissue. In doing so, all bodily systems are affected. Most boys don’t live past the tender age of twelve, or two years after symptoms begin to manifest. There is no cure and no viable treatment. Bone Marrow Transplant and Gene Therapy have success in some cases.
In our darkest hour, we often find our greatest strength. Some individuals never see this strength that resides inside of them; the hour is never that dark. I suppose this is a good thing. But it is this strength that allows me to share this story with you today. For me, this takes moving well outside my comfort zone. And each time I tell my story, it is a small milestone. However, it is important for me to add that I know quite well, I am not a special person. I know this because I did not choose to do what it is I am doing. A special person would have done what I am doing BEFORE their child contract a deadly disease. I was forced. If I could have it another way, a way that spared my family from this monster lurking behind father time, I would. My decision was made for me to try and make a difference — somehow — in someway.
My solo North American expedition is to raise awareness for ALD and funding for the ALD Foundation. I am currently trying to raise money for the expedition project itself as well. Every dollar raised is going to support this project and any left over will go the ALD Foundation. Thus far, this has been a self-funded project.
Through hard work and in meeting some great people, my project snowballed into a place I could not have foreseen. Doors were presented and some opened, that leant themselves to new opportunities to reach further and give more. So I have adapted my goals to aim for new heights and altered my plan of action to reach those goals. But my family can only do so much without the support others. This is just the way it is.
We are average people.
As for the expedition, it will officially begin in Antelope Wells, NM and follow the Continental Divide — 95% off road — to Bannf, Canada. From there I will cross four Canadian provinces before turning south and heading for New Orleans and the ALD Foundation’s headquarters. I will be taking a modified Jeep and Overland Trailer and will be camping the entire way.
I am filming an HD Documentary of the entire expedition project for distribution. I also want to give it to families affected by the disease at no cost.
Media and presentation stops are lined up along my route to help educate people about the disease.
To learn more, visit http://www.expedition-awareness.org — Look for our Facebook and Twitter pages to keep up-to-date with the latest developments.
I believe that my son has this disease for a reason. Maybe it was to push me to do something potentially great with my life. Maybe this is why I am here. My Mother has always said that God never puts on us more than we can handle. I sometimes question this logic. Especially those nights where the reality of it is all too close and that each second forward in time, we are one second closer to a ticking time bomb.
It is in those moments, I truly hope I am doing everything I can for my boy. He does not know what road lies ahead, and it is my goal to keep it that way.
Thanks, Phil, for sharing your story with the whole EatStayPlay.com family. We wish you all the best of luck!