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Skating for a cause | Bellevue family's foundation carrying on legacy of lost son
When Brad Zakes remembers of his son Ethan, all he sees is a passing blur.
Before Ethan passed away from Adrenoleukodystrophy, more commonly known as ALD, in 2011, he had an energy and demeanor typical of a young boy his age. Even in the face of a disease that distorted his coordination and made everyday activities a chore, his most passionate pursuit remained: skateboarding.
"He live for the whole skateboarding lifestyle," Brad said. "He would spend as many hours as my wife and I would allow at the skatepark."
When Ethan's symptoms-things not unusual for a child his age-became more pronounced around Thanksgiving of 2010, his parents took him to see a physician who ordered an MRI, which provided a diagnosis of ALD. A few months later he underwent a stem cell transplant at Children's Hospital and in May 2011, Ethan Zakes was gone.
"Once it has progressed to that point," Brad said of the disease. "There was very little we could do."
Even in the wake of an unimaginable family tragedy, the Zakes knew they wanted to ensure their son's life, albeit brief, would have a lasting impact. After having gone through the gambit of emotions during Ethan's diagnosis and fight with the disease, they had learned more than they ever cared to about ALD. One thing that stuck out was the increased survival rate for those able to detect the disease in its early stages.
For most sufferers of ALD, which is genetic and affects only one in 18,000, the onset of symptoms such as clumsiness, inattentiveness and lack of focus comes after the disease has already progressed beyond treatment.
But if detected early enough through Amniocentesis, treatment is available.
"The test is relatively straightforward," Zakes said. "It's just a matter of having it done so in that rare occurrence where it is detected, it gives the family the opportunity to know shortly after birth."
While early detection could not save their own son, the Zakes hope by raising money and more importantly awareness for the disease, Ethan's loss can be a saving grace for another family.
"As tragic and difficult as it was losing him, we felt the draw to make something good out of what was a horrific experience," Brad said. "We just couldn't help but think the loss of our son wasn't without some form of greater purpose."
So shortly after their son's death, Ethan's parents created The Zakes Foundation, a nonprofit organization geared at increasing the frequency and volume of newborn screening for ALD. Next month, at the same Bellevue Skate Park where their son was once celebrated with a party through the Make A Wish Foundation, the foundation will hold skateboarding competition featuring local pros to.
One of those is Sky Siljeg, a 19-year-old skater from Bothell who has been competing in professional contests for nearly a decade and met Ethan at his Make A Wish Event. Siljeg said he kept in touch with Ethan until his passing, talking about life as a pro skater, new tricks they wanted to try out and a future that would ultimately be cut too short.
"Seeing him really reminded me of where I came from," Siljeg said. "His passion and love for skateboarding reminded me of the fun of it and how cool it is to have the opportunity that I do."
Along with Siljeg will be X Games Silver Medalist Mitchie Brusco, who hails from Kirkland and Brad Zakes said few things would have made his son happier than a gathering of people equally passionate about skateboarding coming together through the sport.
"He couldn't have wanted anything more," Brad said. "At the same time, we can raise money for this disease and we felt it was something we could do to raise awareness."
EZ Rocks for a Cure
When: 10 a.m., Saturday, Sept. 21
Where: Bellevue Skate Park, 14224 Bel-Red Road
Entry fee: $15 and includes a barbecue, interactive games, prize giveaways, vendor booths and silent auction
More information: ezrocks.org.