Expedition Awareness
 
Why Do this
 

We learned of the possibility of my wife having ALD (as a genetic carrier) when she was seven months pregnant with Brooks.  My wife, Melissa, was adopted at an early age.  She knew her brother had passed away from a medical disorder but almost no information was shared with her about her birth family.  It was only through making contact with her birth sister that led us to have her tested for the disease.

We waited almost 5 weeks for the results.  During those five weeks, I began the initial planning stages of what was to become Expedition Awareness.  In learning about ALD and the way it robbed boys of a chance at life, I decided to do something regardless of my wife’s prognosis.  After all it was already personal since her brother had passed from the disease. 

Melissa’s diagnosis hit us like a ton of bricks.  Our son, still growing in the womb was only days away from joining us in the cruel, cold, reality that is our world.  He still had a 50% chance of inheriting the “healthy” X chromosome from his mother so we prayed and kept hoping for the best. 

It took three agonizing months for his test results to come back.  We actually got word the week of Christmas that we could get them.  I asked my wife if we could just wait till after Christmas and she agreed.  Somehow I already knew the fight that lay before him.  The second week of January, we got the bad news.  Brooks tested positive for X-linked ALD – the worst a little boy could have. 

Brooks, at this time, is asymptomatic.  This means whatever switch inside these boys that turns on ALD has not flipped yet.  He is developing at a normal pace and enjoy’s life to the fullest.  According to research, no documented case of symptomatic ALD has been found in boys younger than about 3.5 years old.  This is why I, along with other groups, are working so hard to make a difference right now.

 

Our Story

Brooks Golden
“We actually got word the week of Christmas that we could get them.  I asked my wife if we could just wait till after Christmas and she agreed.  Somehow I already knew the fight that lay before him.  The second week of January, we got the bad news.”
- Phil
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