by Caroline Downs
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Posted 2/13/13 (Wed)
You could describe Ron McNeiley of Kenmare as an average good guy.
He’s a good father, going camping with his kids and watching their ball games.
He’s a good employee, someone his co-workers and customers at Farmers Union Oil count on to get his work done in the shop.
He’s a good husband who encourages his wife in her endeavors and even helps put up the Christmas decorations--cheerfully.
He doesn’t hold a major political office or run a Fortune 500 company or hide from the paparazzi to protect a celebrity status, but he is quick to help someone or ask about another person’s day or make sure everybody has what they need for an outing or activity.
He was pretty content with that life.
Now, Ron has become one in a million.
Actually, he ranges from one in a hundred thousand to one in a million. That’s the variance in probability for developing Churg-Strauss syndrome, an incredibly rare autoimmune disease that causes the body to act against itself, in this case resulting in inflamed blood vessels that can impact and damage any organ or system.
Don’t feel bad if you’ve never heard of Churg-Strauss. For one thing, the syndrome mimics at least a dozen other diseases, including bronchitis, pneumonia, influenza and leukemia.
For another thing, you’ve probably never met anyone before who was diagnosed with CSS. According to the statistics, maybe six people in the entire state of North Dakota could have the disease. Maybe. Across the nation, the current estimate is 720 to 3,000 CSS patients.
So you could say Kenmare has one very special good guy with an address on Central Avenue.
The thing about Churg-Strauss is the disease doesn’t care if you’re a good guy or otherwise. The symptoms can be debilitating and even lead to death. Those symptoms can also be treated, to some extent. In many cases, CSS goes into remission, although medical treatment must continue.
It’s a life-altering moment to receive a Churg-Strauss diagnosis. You can read the story in today’s issue about what Ron and his family have faced together during the past two years, but their focus is less about that past and more about the present: How does Ron feel right now and how do we deal with this today?
Kenmare has been lucky to have an average good guy like Ron and his family living in the community, but the McNeileys feel pretty fortunate themselves to have friends and neighbors who have provided meals, errands, chores, cards, hugs and other kinds of support.
That support continues with a benefit planned for Ron on February 24th at Kenmare High School and an account established for him at Town & Country Credit Union.
Ron keeps on being a good guy. True to form, he allows doctors from all over the United States to observe his case, and he has agreed to participate in a study for new medications designed to treat CSS. He told me he hopes what doctors learn about his situation will help someone else “down the road.”
Kenmare’s one-in-a-million guy reaches out to the other one-in-a-million Churg-Strauss patients.
Which doesn’t surprise anyone who knows him.