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Family not alone in facing crisis with Lyme disease

TAMPA, Fla. (BP)–A walk in the countryside sounded inviting to Susan Parrish and her three children, suffering from a touch of cabin fever after a long winter in 1992. They relished the feel of tall grass against their legs as they searched for asparagus that grew wild in the hills of Waukesha, Wis.
But within a week, the Parrishes were experiencing flu symptoms — except Susan’s husband, who had not gone on the walk. Susan, along with her children, ages 9, 6 and 2, continued to experience sore joints, fever and stiff necks throughout the summer.
By fall, they knew they were experiencing something more serious than the flu. The 6-year-old suffered a stroke in September, followed by two more strokes in the next two months.
Unable to find answers, doctors suggested the family relocate to a warmer climate. They moved to Tampa, Fla., and soon joined Idlewild Baptist Church there. The middle child’s strokes stopped but he and the others continued to have unexplained health difficulties. The family has sought emergency room treatment at least 39 times, once for three of them at the same time.
When Susan noticed a rash on her calf, she asked to be tested for Lyme disease, a bacteria carried by some deer ticks. Doctors instead suggested she might have multiple sclerosis, for which she tested negative. They never tested her for Lyme disease.
Three years later, her middle child had another stroke. Susan, who by then had done extensive research on Lyme disease, insisted the boy be tested for the debilitating illness, which weakens neurological and cardiovascular systems. He — and subsequently the others — tested positive for the disease.
Lyme disease, if caught early, can be treated with oral antibiotics, but after three years of misdiagnosis the disease had progressed to the point that intravenous medication was required several times a week.
The cost of that and other treatments accumulated quickly. In response, Idlewild established the Parrish Family Fund to help the family pay about $1 million in medical bills — including $1,000 per month just for basic doctor visits and medication.
Hearing about the church’s efforts, George Steinbrenner, owner of the New York Yankees, paid $7,000 in travel expenses so Susan and the children could receive an experimental treatment for Lyme disease that meant being confined in an oxygen chamber for a month.
Reno Zunz, Idlewild’s minister through family care and missions, said the couple’s Sunday school class has been at the forefront of making sure the family doesn’t have to go through their illness alone.
The class brought meals, provided child care and did housework for the family when Susan felt too weak from intravenous antibiotics to teach her younger two children in home school. They also helped when a weakened bone in Susan’s back fractured when she picked up a bag of groceries, and when she was bedridden because of a bleeding aneurysm in her brain.
Susan said the family has felt incredible strength from the church’s support and prayers.
“The purpose of the church is to help people in need,” she said. “Idlewild has certainly done that better than I’ve ever seen. They’ve been so concerned for us that I’ve felt almost like we’ve all been going through it together.
“You think there’s no way you could make it through the desperate times, but you do. You cling to God, and you cling to those prayers. We relied on prayer at every turn, and God answered by sending us someone for every need.”
Now feeling better, the Parrishes have been able to discontinue intravenous antibiotics, though they still must take other medication and keep a close watch on their health. The family recently took its first vacation in five years, which included horseback riding for the kids.
“This disease has been an awful, painful thing to go through, but I take joy in my kids,” Susan said. “Even though they have been through so much, it has made them into the wonderful people they are. This has made them very strong in the faith. They’ve learned that life is short, that there are no guarantees — except for their future with Christ.
“When everything is over and done with in this life, I want to look back and see that we asked, ‘What Would Jesus Do?'” she said. “The answers to all our other questions will be revealed in his time, not ours.”

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  • Kristi Hodge