Family and Friends Raise Awareness about “ALD”
Evan Cousineau, a remarkable nine-year old, was surprised with a surf day at San O’nofre State beach yesterday morning. Quiksilver team riders and staff along with family and friends joined Evan, who was recently diagnosed with a rare, degenerative disease called adrenoleukodystrophy (ALD), for a day at the beach.
ALD is a genetic disorder that affects the nervous system and the adrenal cortex causing both neurological problems along with hormonal imbalance. Those affected often experience problems related to mental function and/or abnormalities in blood pressure, heart rate, and development. Due to varying behavioral symptoms, ALD is commonly misdiagnosed, as was the case with Evan whose original diagnosis was Attention Deficit Disorder.
“When that RV stopped in front of our house, Evan’s eyes just lit up!” Mark Cousineau (Evan’s father) said. “It means the world to us that so many people have come out to support him.”
Evan’s parents have started a community and online campaign to generate awareness about ALD which promotes early detection.
“All we can do at this point is wait (for a bone marrow transplant). We’re hoping that Evan’s case will encourage others to detect ALD sooner in their children,” Gina Cousineau (Evan’s mother) said. “The bottom line is that if we can save just one life through telling Evan’s story, then we’ve succeeded.”
Quiksilver was represented by team riders Josh Hoyer, Todd Richards and Strider Wasilewski as well as Natas Kaupas, Greg Macias, Todd Kline and MoDaddy.
Visit Evan’s page at www.caringbridge.com: type in “evancousineau”
For information on ALD and blood marrow donation visit: www.aldfoundation.org