|Patsy Johnson and her daughter, Mary |
Jean, are taking the world-touring
Burke P. Bear for a ride. Johnson is
the Ohio host for the teddy bear.
CF is the most common, fatal genetic disease of children and young adults, and it primarily impacts the lungs and digestive systems. People with CF have thickened secretions that block the airways and the pancreas in causing chronic lung infections and an inability to properly digest food unless they take pancreatic enzymes. Currently, the average life span is 37 years, but several years ago most children lived less than 10 years.
“I think about the kind of life she’s going to have each and every day,” Johnson said, “and I’m going to do what I can to help her and the rest of the family thrive.” Johnson has five other children, Brooke, 10, Owen, 8, Matthew, 6, Lucas, 4, and Hunter, 2. Mary Jean’s father, Bob Neiswinder, is a truck driver who works long hours and also does part-time handyman jobs to keep the family afloat.
“We had a recent CF fundraiser to help the family and to create a broader awareness of CF,” Johnson says, “and it paid for a few weeks of diapers. It’s tough to keep a big family going in this economy, and driving to Dayton for Mary Jean’s check-ups and then having one of us be there with her when she’s hospitalized makes it difficult.” Mary Jean was in the hospital twice, once for 15 days and again for 23 days due to lung infections that are common with CF.
A few months ago, Johnson contacted Pennsylvania Cystic Fibrosis, Inc. (PACFI) because she was interested in their website (see www.pacfi.org) that featured a teddy bear named after a teenager who had died of CF. She talked to PACFI’s Bob Derr who said that the bear was named after his son, Burke P. Derr, who died due to CF in 1997. Derr told her that Burke P. Bear has toured 45 states and 23 world countries since 1998 and raised over $450,000 for CF research.
Johnson found that PACFI is an independent, nonprofit, all volunteer organization that helps Pennsylvania families affected by CF and gives annual allocations to CF research. When Derr asked her if she might want to host Burke P. Bear in Ohio, she agreed. One of the perks of hosting was that Mary Jean received her very own Burke P. Bear. And, in what can only be called a major coincidence, she found that Mary Jean’s doctor, Dr. Stephen Wolf, was also Burke P. Derr’s doctor more than 20 years ago.
“Bob Derr told me that PACFI has helped many families in Pennsylvania,” Johnson said, “and he agreed to having PACFI coordinate funds for any donations we might get to help out with regular monthly expenses and any medical expenses related to Mary Jean’s needs.”
Anyone who wants to help the family can make a check out to Mary Jean Neiswander CF Account and mail it to Old National Bank, 3433 East Main Street, Richmond, IN 47374. People can also make a check out to PACFI and mail it to PACFI, Helping Mary Jean, P.O. Box 29, Mifflinburg, PA 17844. All donations received by PACFI will be forwarded to Mary Jean’s account.