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A transplant for life

"Terry Nowak is not asking for anything lavish.She wants to walk on the beach with her son and go shopping with her daughter. She wants to be able to stay home alone and give her husband the freedom to do some of the things he enjoys outside of the house.It’s a wish that might come true, if the family can come up with about $75,000 in the next couple of weeks.Nowak, who was diagnosed with Multiple Sclerosis in 1991, is scheduled to undergo an experimental stem cell transplant sometime next month. On top of everything the family has gone through, they now have to wait to find out if their insurance company will cover any part of the experimental procedure.Or if they have to put a second mortgage on their house.To help the Nowaks pay for the procedure and many related costs, a couple of local women — Betty Freund and Julie Fakkema — have started a fund for her and are having a bake sale in her honor at Oak Harbor grocery stores.“One of the things that made Terry so special is that she is always ready to reach out to those in need in her community here in Oak Harbor,” Julie Fakkema said. “Now she is the one in need.”Yet the stresses and worries that fill their lives vanish as Terry and husband Gordon Nowak discuss the experimental procedure in the livingroom of their Penn Cove home. Optimism fills the room.“I don’t know how it can fail with so many people supporting me,” she said.Nowak was recently accepted into a clinical trial program at Seattle’s Fred Hutchinson Cancer Research Center because of the advanced nature of her disease and her unresponsiveness to the drugs available.Nowak’s MS has progressed to such an advanced degree in the last year that she’s lost much of the use of her legs and hands. She cannot stand, carry a purse, or write. Like most MS patients, she suffers from giant waves of fatigue.Without an extreme treatment, things will only get worse for Nowak. “It’s like I’m looking into a dark abyss,” she said. “My next progression will land me in bed needing round-the-clock care. At 46 years old, I’m not quite ready for that.”MS is a debilitating and difficult-to-diagnose disease that affects about 350,000 people nationwide. More people in Washington have MS than any other state, and the disease is more prevalent in northern latitudes for reasons doctors don’t understand.According to Fred Hutchinson Cancer Center, MS causes a person’s own immune system to attack the nervous system. The disease is diagnosed with a magnetic image of the brain, which shows white spots where tissue is missing. Scientists still don’t know why people get MS. And there’s no cure.The stem cell transplant, Nowak said, will only stop the progression of the disease and bring her down a few notches on the “extended disability status scale.” She’ll never be a marathon runner, but Nowak hopes she’ll be able to walk, with the aid of a cane, again someday. Although stem cell transplants have become common in the treatment of leukemia, it’s still an experimental procedure for auto-immune diseases. Doctors have just started look at it as a way to treat immune system diseases like MS, lupus, rheumatoid arthritis and scleroderma.“I’m not just doing this for myself,” Nowak said. “If it works for me, it’ll open the doors for many other people who are suffering.”Although stem cell transplants are fatal in only about 5 percent of the cases, it is very tough on the patient. It’s similar to a bone marrow transplant, but instead of receiving another person’s marrow, the patient gets a transplant of her own healthy stems cells after her immune system has been destroyed with chemical and radiation.Without a healthy immune system, Nowak will be very susceptible to a variety of illnesses, with pneumonia being the most deadly. After the procedure, she and her husband Gordon will have to spend several months in a special apartment near Fred Hutchinson.Yet with all the suffering and frustration behind her and still ahead of her, Nowak said the disease that’s clouded her life has helped make some things clear. Through her own dependence on them, she said she’s really come to realize the importance of her family and their love.“In some ways, MS was the best thing that ever happened to me,” she said. “I’m a much better person. I’m much closer to my kids and husband.”To donateDonations to the Terry Nowak Fund can be brought to any branch of Whidbey Island Bank. A holiday bake sale is planned for Dec. 11, a Saturday, at Oak Harbor grocery stores."

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