Devoted dad fights for son, ALD awareness
Posted at: 09/07/2012 8:23 AM
By: Heather Mills, KOB Eyewitness News 4
You may have seen them making their way through New Mexico down Route 66, or on the dirt roads of the Trans America trail.
But for Phil Golden, this journey isn't about off-roading and seeing the country - it's about raising awareness of a rare disease, and it's personal.
Phil Golden and Chris Nash are on a mission across North America to educate.
Expedition Awareness started in Texas, in the name of a rare disease called Adrenoleukodystrophy, or ALD.
"It's a really remote, grass-roots movement to try and educate people about the disease," said Phil Golden, founder of Expedition Awareness.
His son Brooks has ALD, an X-chromosome-linked metabolic disorder that only boys can get.
It shows up in early childhood. It's a progressive disease, eventually leading to a vegetative state, in as little as two years.
"It's often misdiagnosed as ADHD," said Golden. There's no cure.
"You wake up to a nightmare and you can either sit back and wait for things to unfold, or you can try and do something about it."
So Golden set out on a tour. He's already completed one phase, across the Continental Divide via Jeep. This is phase two, along the Trans America Trail, on motorcycle.
"There's a ton of little bitty towns that you run in and out of and as you go through those towns, we're tapping people on the shoulder at the gas pump," said Golden. "We hand out flyers, we put business cards on bulletin boards. We stick stickers on road signs."
Golden and Nash are headed home to Texas now, but for Golden, this mission is far from over.
"All I can do is push as hard as I can, as long as I can and still be with my son while he's OK."
For more information on Expedition Awareness, or ALD, visit http://www.expedition-awareness.org/ALD/HOME.html