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By Stephen Press
Hometown Weekly Staff
Justin Doo is one in a million. Or one in two million, if the statistics are to be believed. Justin, a Walpole resident and senior at Xaverian Brothers High School, has moyamoya disease, a rare condition that doctors estimate affects only one in two million people. The disease involves a constriction of the blood vessels to the brain, causing strokes and other similar damage if left untreated.
The diagnosis of moyamoya makes Justin unique. What he's done with the diagnosis - using it as an impetus for a yearly event to raise both funds and awareness for his rare condition - makes him special.
On Saturday, June 18, Justin and his family hosted the 9th Annual Moyamoya Fundraiser at their Muskett Lane home. The fundraiser, which involved a 5K run/walk, 3-on-3 basketball tournament, dunk tank, balloon raffle, concessions and an online auction, has become a yearly highlight for both the Doo clan and community.
"This is like Christmas day for my kids," said Lisa Doo, Justin's mother, who's spearheaded the fundraiser for years. The event's genesis, it turns out, lies with those same children.
"When Justin first had his surgery, my kids were 7, 5 and 3," said Doo. "When he came home from the hospital, a few weeks later, the kids all got their toys together and said: 'We want to sell these toys and give the money to the doctor that helped Justin.'" The touching moment led to a successful yard sale that, over the years, expanded into the event's current incarnation. "We're trying to grow with Justin as he gets older and as my kids get older," she added.
"This is a passion I have," said Justin, whose childhood silhouette serves as the Moyamoya Foundation's logo. "It's something that obviously personally affects me. The fact that so few people - so few doctors - know about it. My goal is to raise awareness and contribute as much as I can to help the doctors research and hopefully find a more beneficial cure."
Awareness, it turns out, is just as important as fundraising. Due to the disease's rarity, moyamoya often goes untreated, sometimes with fatal consequences. "One of the reasons for that is misdiagnosis," said Lisa. "The only way right now to diagnose it is an MRI, but they're really expensive." By getting the word out about his condition, Doo hopes to bring moyamoya to the forefront of public - and, perhaps more importantly, medical - consciousness. Looking around at the collection of diverse, energetic people who had come to support him and be a part of the day, one got the sense that Justin & Co. were succeeding on that front.
"I think it's a great event to support the moyamoya cause," said Laura Guzzi, a Xaverian Spanish teacher who'd taught Justin as a sophomore. "Justin has always been a student who's kind of special to us, so we really wanted to support his family and the cause that they're supporting."
Among the others who attended were even an individual directly touched by moyamoya herself. Lara Stoller, who experienced symptoms consistent with the disease in her thirties, has the fundraiser to thank for her eventual diagnosis and treatment. "It's very important for me to be here," she said as she took in her surroundings with an air of gratitude.
"Every year, we have so much support," said Justin as some laughing friends crossed the 5K finish line. "It sometimes gets hard to ask for money every year - that's definitely difficult - but the support I have is amazing. Family, friends, even the school community. It's been great. Just seeing all the people here today, it really is a testament to the people I have in my life. It's really been fantastic."
