(Photo courtesy William Khazaal, pictured with son Gabriel)
By Tracy Record
West Seattle Blog editor
Inspired by the success of West Seattle for Japan, the multi-business quake-relief benefit organized by West 5‘s Dave Montoure, another communitywide fundraising effort is in the works, and seeking more participants.
It’s World MS Day Seattle on May 25th, and while is meant to be citywide, it is West Seattle-born, and so far, most of the participants are from WS and White Center.
World MS Day Seattle is the brainchild of a West Seattleite, 36-year-old William Khazaal. If his name sounds familiar – maybe that’s because his family runs the popular Alki restaurant Phoenecia.
For William, it’s not just an idea – it’s for the fight of his life, as well as millions of others.
Right about the same time his dad died, William not only was studying at the University of Washington business school, and subsequently using his skills to help his mom and sisters reopen Phoenecia in early 2010, he was dealing with having been diagnosed with multiple sclerosis. And all along the way, he was also busy as father of two sons, his now-almost-6-year-old, Gabriel, pictured with him atop this story, and Blakely, who is approaching 3.)
With all that, he barely had time to stop and think about what the diagnosis meant.
MS is a disease in which the immune system attacks the central nervous system. It is progressive – it doesn’t suddenly strike full force; William says his symptoms included fatigue and dizziness, and were not recognized by several doctors until he finally found his way to a neurologist. MS can be fatal, and there’s no known cure. The cause isn’t even fully understood, and as you might recall seeing from a public-awareness campaign, it strikes more people here in the Pacific Northwest than in many other areas.
William is clearly not the kind of person who will sit back and accept his fate. What he is doing now is part of a two-pronged effort – now that he has had time to process what that diagnosis could mean, and what he could do to help both himself and others.
William is enlisting friends, family, and everyone he can to help raise money for research and for patient support. World MS Day Seattle – getting businesses to pledge part of their proceeds on May 25th – is a big push in the short run. In the long run, there’s a book that he and friends have written, tied in with their UW business studies, “The MS Children’s Book,” to explain multiple sclerosis to children.
William says it’s helped with Gabriel, who “was scared … it’s hard to explain to an adult, let alone a child.” But now, Gabriel understands more about what’s happening if Dad is having a bad day.
100 percent of the profits on the book will go to three multiple-sclerosis charities: National Pediatric MS Center, National MS Society, CCS-VI Alliance (which is more research-focused, he explains).
Right now, they’re taking pre-orders – and even if you don’t have anyone who might benefit from the book, there’s an option to buy a copy and have it donated to someone who can use it. The goal, says William, is to sell 10,000 copies, and he’s learning that’s a pretty tall order in the book world, though they already have a few hundred pre-orders. He hopes to get the word out nationwide, since certainly MS is not an exclusively local issue. (Buy the book by going here; buy the book to donate it to someone, by going here.)
But back to World MS Day Seattle and the hope more businesses will join in: It’s being organized much the same way as the aforementioned West Seattle for Japan, or Dining Out for Life-Seattle – participants, mostly restaurants (though other businesses are welcome), will donate part of what they make on May 25th. The proceeds in this case will go to research through the “MS Children’s Book,” buying donated copies for families and patients.
A frequently updated list of participants can be found within the World MS Day Seattle Facebook site. They have more than 30 signed on now, and are hoping to get to 100 by May 25th – that’s a tall order in a short amount of time.
Maybe you’re wondering, how is William working on organizing all this, while dealing with a debilitating disease?
He explains that in the early years, MS can come and go – in a cycle of relapse and remission. He proudly says he can still pull a 12-hour workday if he really have to, and that’s crucial since he is a few months away from finishing business school. But – looking further down the road – he says matter-of-factly that as it progresses, the periods of remission become shorter, then nonexistent. Most MS patients are diagnosed between 20 and 40, he explains, but there also are children dealing with it – thinking of his own son, he wonders, “what would it be like, never to really have a childhood?”
As for himself: “I’m trying to stay positive. I don’t think it’s going to stop me. I’m taking something …” he ponders whether “tragic” is the right word, and decides it’s more a case of “…taking adversity, to try to turn it into helping other people. Never in my life did I think I’d become an advocate for any sort of disease.”
Not only has he become an advocate, he’s become something of an expert; we ask how it’s diagnosed, and he pulls up on his laptop a presentation he gave at UW, showing brain imagery – no two MS cases are exactly the same, he explains; the immune system attacks the nervous system at various spots, and the resulting lesions – scars – will generally show on diagnostic imaging.
As for treatment … though, again, there is no cure, there have been some experimental drugs. William says he’s tried them. The side effects tend to outweigh the benefits. One drug, he said, was so powerful that a patient’s likely to be laid up in bed recovering for three days – after taking the weekly shot. A pill, he said, was found out to be potentially carcinogenic, but not until after it had been tried for a while.
Researchers have to find out what causes it, before they can find out how to cure it. “I would love to see an end put to it,” he declares.
But first, research requires money. And that’s what World MS Day Seattle is about. To join the list of participants, you can contact William at firstname.lastname@example.org or 206-793-7957.
And then, most important, get out and patronize the participating restaurants/merchants on May 25th.
It’s a big day for William to look ahead to – but he has two more after that: The next day, his son turns 6. Four days after that, he turns 37. He’s hoping for many more birthdays after that, for himself and others fighting MS – and maybe something he does now, with “The MS Children’s Book” and World MS Day Seattle, will have a hand in making that hope become reality.
| 5 COMMENTS