When Lisa Doo planned a yard sale last year to benefit research for Moyamoya disease, of which her son Justin is stricken, most folks in the Walpole area had never heard of the disease.
Now, with another sale planned for Saturday, more residents are aware of Justin’s case, but Lisa explains that there is still much to do to get the word out.
In short, Moyamoya (MMD) is a very rare cerebrovascular disorder that blocks arteries at the base of the brain in an area called the basal ganglia. Children who are afflicted with the disease, like Justin, often suffer from recurrent transient ischemic attacks (TIA), or mini-strokes. Over time, the disease will typically create mental decline and multiple strokes, eventually leading to death as a result of intracerebral hemorrhage.
While last year’s yard sale was held to fund the research being conducted on MMD by Dr. Michael Scott at Children’s Hospital Boston, this year’s event has the Doo family thinker bigger with a car wash, face painting, raffle items and a new website, in addition to the yard sale, on the menu.
While Lisa acknowledges that researchers are not much closer to finding a cure than they were a year ago, she does relate that knowledge of the disease is far greater.
“Not much (has happened) in terms of research findings, but the first ever publication in the New England Journal by Dr. Scott and Dr. Edward Smith was published in March, receiving worldwide medical acknowledgement for the first time ever,” she explains.
With that said, Lisa still believes that the word could be spread more. She states that most people have yet to learn of the disease and what research can be conducted to fight it, “Unless you have met me or someone in my family who continually share our story. There is some belief that (the disease) is more prevalent than it seems, but many kids go misdiagnosed.”
Justin, currently a 4th grader at Fisher School, was diagnosed when he was seven after periods of increasingly severe headaches and numbness in his tongue, arms and legs. In April 2007, a month after his diagnosis, Justin underwent eight grueling hours of brain surgery at Children’s Hospital in an attempt to treat the disease.
Despite the surgery, Justin continues to suffer massive headaches and TIA’s. This far, he has fortunately been free of any major strokes.
“It breaks our hearts when he wakes up with a TIA or massive headache, which occur about every two weeks,” Lisa says of Justin. “He gets scared and so do we. He understands that having MMD is very serious.”
Since last year’s sale, however, Lisa relates that the Walpole community has shown an outpouring of support. Walpole business owners, in particular, have really stepped forward to help with this year’s event.
“Local businesses have been great in donating gift certificates to raffle at the event,” Lisa says. “Local friends have been very supportive, because they understand how much this has affected our lives and that this is very important to help Justin and others like him.”
The yard sale event will take place on Saturday, June 6th at 3 Muskett Lane from 9:00am- 1:00pm (rain or shine). In addition to household items available for sale, this year’s event will also feature the aforementioned car wash and face painting, MMD t-shirts and beach towels will be available for sale and several items will be raffled, including sports tickets and gift certificates to local restaurants, hair and nail salons, dry cleaning and more. All money raised will be donated for MMD research.
“Justin wakes up most days with a huge smile. He is a happy-go-lucky kid,” Lisa says. “He wants to be a ‘normal kid’, so we really try to keep his life as normal as possible. Some friends ask us how we handle it all and we just say that we truly have to take one day at a time. If he wakes up with a smile, out day is great!”
More information can be found at the Doo’s new website, www.Moya-Moya.com.
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