World MS Day was launched in 2009 with over 200 events in 67 countries to raise awareness about multiple sclerosis (MS), a chronic, often disabling disease. It is one of the most common disabling neurological conditions amongst young adults in the northern hemisphere. Over 2,000,000 people in the world have MS, 400,000 Americans. Northern latitudes like ours show high rates of the disease, especially in Eastern Washington.

Some Seattlites afflicted with MS say the disease is misunderstood and even unknown to many and are taking advantage of World MS Day on May 25 to raise awareness and money for the illness.

Seattle resident William Khazaal learned he had MS in the summer of 2009. It was a tough time for him. Many know William as the son of Hussein Khazaal who owned the Phoenecia Restaurant in West Seattle which he ran with his wife, Inaam and their three children, Sonya, Nadia, and William. Hussein passed away suddenly in August, 2009, and, after a lot of consideration, the family reopened the restaurant about a half year later.

"I was diagnosed five weeks before Dad died," said William, 36. "He was always supportive of me from the day I was born. He was my best friend. He basically cooked every meal for me from the time I was diagnosed until the time he died."

Always the chef, his father cooked healthy meals that comforted William and gave him a sense of healing. Now William wants to help his two sons, Gabriel, 5, and Blakely, 2.

"Through social media I talked to about 50 people who have MS," he said. "Five others and I decided to write a book about MS. At first we thought we'd write a book of poetry, or a book about inspirational stories. Then those (50) people decided what they really wanted to see was a children's book. When I was diagnosed, Gabriel was afraid I was going to die and that he was going to catch it."

MS CHILDREN'S BOOK

William and the others created the "MS Children's Book".

"This book isn't so much about my MS, it's about the next generation," William said. "I am finishing at the Foster School of Business at UW. I am enrolled in an entrepreneurial program to create a company. A group of students and I decided to do something for a good cause. When MS was mentioned by the others I thought, 'Now I am going to tell them I have it.' I get very dizzy, really tired, and had surgery for double vision. I'm lucky compared to some people, but it has only been two years. This whole project is great if I can help other people. It gives me strength and a purpose.

"We hope the next generation will have a vaccine," he said. "There is not much awareness, and not much money going to MS research. In Seattle you see those large MS billboards, 'Is it in the water?' I realized there wasn't any event like that in Seattle. I am always researching everything about MS now. Even though it's prevalent here a lot of my friends don't know what it is. I didn't know what it was until I was diagnosed. People thinks it's Parkinson's Disease like Michael J. Fox has. The purpose of book is to educate and help parent/child bond. Our goal is to sell ten thousand books to raise $100 thousand."

William is asking businesses throughout Seattle, especially restaurants, to donate a percentage of their sales on May 25 to go toward the purchase of the MS Children's Book. Those books will be donated to kids. Also, books will be sold, and money donated to the National MS Society, Natl. Pediatric MS Center, the CCSVI Alliance. ( “Chronic Cerebrospinal Venous Insufficiency") So far he has lined up nearly 50 business in Ballard, Fremont, West Seattle, White Center, Burien, Capitol Hill, downtown, and elsewhere. He continues seeking more.

"We realized a lot of people wanted to help but didn't have a need for the book," he said. "So they can gift the book and it gets donated to camps for children with MS, to the UW Medical Center, Children's Hospital, Stony Brook University Medical Center (in New York)."

Current list of businesses donating:

As of Saturday, May 14, the participating businesses include: Ray's Boathouse, The Ballroom, Easy Street Records, Uptown Espresso in Wallingford, West 5, La Rustica, Beveridge Place, Avalon, Fresh Bistro, Blackboard Bistro, Puerto Vallarta West Seattle, RockSport, Sugar Rush Bakery, Leisure Books, Tuscan Tea Room, Angelina's, Side Street Kitchen, Chaco Canyon WS, Meanders, WS Cellars, Cafe WS, Slices on Alki, Dukes on Alki, Phoenecia, Proletariat Pizza, Company Bar, 3.14 Bakery, Joule, Revel, Gaspare Restaurante, Pink Door, Full Tilt White Center & U-District, Uncle Mike's BBQ, Big Al Brewery, Barrio Capitol Hill, Talarico's, Delancey, Circa, Tidbit Bistro, Ethan Stowell Restaurants, Tavolata, Anchovies and Olives, How to Cook a Wolf, Staple and Fancy Mercantile, Eco Beauty Salonspa, Munchbar Bellevue, Freshy's Coffee, Heartland Cafe, Spring Hill, and Chuck Olson Chevrolet/Kia service Department.

Sydni Smith, MS advocate

Many know Sydni Smith of White Center as an advocate for MS awareness. She is helping to promote MS Children's Book.

"I've never been quiet about my MS," said Smith, who uses a cane to help steady her walk. Her symptoms are more painful than William's. "If you don't ask about it I'll end up blurting about it in conversation anyway. Many people with MS aren't outspoken about it. It's an incredibly private illness and some of the things it does are so humbling. For me, it became a chance to use my people skills and outgoingness to talk about it. People ask me all the time, 'Why do you walk with a cane?'

"Trying to explain the actual illness is incredibly difficult and so William explaining it in 'little kids style' is not only brilliant, but the first thing I said to him was, 'I want the book for my family members that aren't kids. It's not something you can explain in a sound bite, and most people are trained to want one, an instant explanation. It's a really confusing illness. It took 12 years and over 20 doctors for me to be diagnosed, including being sent to a shrink three different times. I got officially diagnosed in 2004. I already had flare-ups, lacking the ability to move certain parts of the body. I learned through MS that my energy is a precious commodity, my most limited resource. Teri Garr has it. Richard Prior died from (complications from) it."

Officially MS is not considered fatal, but some, like Richard Pryor, do die of complications related to the disease.

"I was working road service and loved it," recalled Smith about her active, pre-MS days. "I grew up in Alaska and needed air around me at all times. I loved my job. I changed 10 tires a day by hand. I was out driving every day, all day, talking to people always happy to see me, changing their tires, unlocking their cars. I loved helping people. It made me feel like a bad-ass because I'm a woman doing a job that some guys are absolutely helpless at. Working in an office was a death sentence.Then all of a sudden I couldn't move my arm. It is very humbling to realize you're no longer defined by your (former) career. I tell others with MS, 'Learn how to accept help when offered, ask for help when needed, and try to always stay positive."

"Susan" frm Alki has MS, but no symptoms

Alki resident "Susan" (not her real name) was diagnosed with MS in August, 1977. Vertigo brought her into the doctor, including hand tremors, foot spasms, speech slurring, and fatigue. She began taking a nightly shot of the drug COPAXONE which claims to fight symptoms and prevent harmful cells from developing.

She is fortunate. So far she has had no flare-ups, no symptoms in many years, although direct sunlight and heat sometimes causes her fatigue. Like Sydni Smith, Susan's doctors responded to her medical issues with skepticism and condescension.

Susan recalled, "One doctor said to me, 'You expect me to believe your vertigo and foot spasms are related?' I'll never forget that. I was like, 'I don't know. I'm not the doctor. I am just telling you what I am feeling.' I was so mad. She ordered the MRI's and found the lesions."

Susan is one of those people Smith pointed out as being private about their disease, and not wanting to discuss it with everyone, just loved ones and close friends.

"I don't want the 'sad pouty face' people give me when I do tell them," said Susan. "It puts them on the spot to react. I don't want them to feel sorry for me. I do attend MS support groups and have met many nice people there, and keep up on current information on medications. The MS Children's Book would be great to share with my young niece and nephew."

To learn more about the "MS Children's Book", visit www.mschildrensbook.com.