Wednesday night we introduced you to the Golden family. Phil and Melissa's 9-month old son Brooks has a rare disease. It's called Adrenoleukodystrophy, or ALD.
There's no cure for ALD. It usually appears in mid-childhood, with a rapid onset of symptoms including deterioration of all motor skills, and ends in death.
Brooks is a-symptomatic right now, and Phil is on a mission to find hope, fighting ALD the way he knows how.
"I'm not a chemist, but I can drive a Jeep and I can work on a Jeep and I can drive a long ways," said Phil. 5,300 miles to be exact. That's 3 countries, 16 states and 4 provinces, with one goal, awareness of ALD.
Phil Golden's son Brooks has ALD. It's a rare disease that affects only one in 18,000 boys. Phil and his wife Melissa found out she was a carrier when she was pregnant with Brooks. Phil says he hopes embarking on an awareness mission will help other families get the diagnosis they need. He says, "It's really a child's life is what the true benefactor of this. Not a foundation or a couple of parents or a few parents. It's the children."
Phil works full time to support his wife and their two kids. "Expedition: Awareness" is a purely philanthropic endeavor, and he faces a tough journey ahead, both at home and on the road. He says, "I don't wanna look back on this time and say, you know, you worked night and day away from your family, you were gone forever, you put all this time and work into this project when you should have been with your family."
The trek will kick off sometime next summer. Phil says it'll take about 8 weeks. He's working in partnership with the ALD Foundation.
David Cry, the CEO of the ALD Foundation, calls Phil's work, heroic. He told us,"I mean it's simply incredible. He's essentially putting his life on hold to help raise awareness about something he's passionate about and that's a very rare thing in our world."
While Phil prepares to face the unknown in an expedition funded through donations and his own pocketbook, he remains hopeful this awareness quest will do just that and educate.
In November Phil has also organized a fun run and walk in the name of ALD.
