athome Written by: Bailey Hemphill
Family Success Story The Scheopners
M
eet the Scheopner Family—Jason and Jessica, and their children William, Juliana, and Jonathan of Dundee! Jason and Jessica are celebrating 17 years together and are thankful for their beautiful children, who are students in the Omaha Public Schools district. The Scheopners’ daughter, Juliana—who goes by the nickname “Jules”—has been named Nebraska’s ambassador in the 2011 Children’s Miracle Network Hospitals Champions program. But the title didn’t come without a little struggle on Jules’ or the family’s end… On a Sunday afternoon, when Jules was not quite three, she was playing on a slide when she complained of severe back pain. The Scheopners immediately sought medical attention. The X-ray revealed not one but multiple fractures in her vertebrae, which led to more tests. Through a chain of events that can be accurately described as a miracle, she came to be diagnosed with mild osteogenesis imperfecta (OI), which is a rare genetic disorder characterized by fragile bones that break easily; it is also known as “brittle bone disease” and affects the person throughout his or her lifetime. According to Jessica, it is only because the family went to Children’s Hospital—where some of the top experts in the world practice—that she got a correct diagnosis from the coincidental accident. “Had this happened almost anywhere else, she would almost certainly have gone undiagnosed, and consequently, untreated,” says Jessica. “Because of her diagnosis, she has a very different life than she would have had if this diagnosis had been missed.” Jules receives bisphosponate treatments at Children’s, which have decreased her fractures, increased her bone density, and relieved her of the chronic bone pain that she had come to know as normal for the first three years of her life. During her appointments, she puts on her beloved horse slippers and settles in for the five-hour intravenous treatment. After watching a movie, eating lunch, doing crafts, and enjoying alone time with her mom, Jules is freed from the IV pole and takes a “victory lap” around the hallway, galloping past nurses and other caregivers.
14 • athome
live•love•grow
From left: Jason, Juliana (Jules), Jonathan, Jessica, and William
The Scheopner family was initially shocked when they learned of Jules’ disorder, but they all stepped up to the challenge and surrounded her with their love and support. In fact, the family has even made changes to their own lives to make Jules’ lifestyle of fracture prevention and care easier. Jessica explains that they choose swimming over activities with physical contact, and they help Jules keep up with her brothers on the playgrounds by spotting her and keeping her from falling. But for the most part, Jason, Jessica, and the boys try to give Jules the freedom of a normal, eightyear-old life. “They told us to let her be a child,” Jessica says. “They have helped us to see the OI as just one small part of who Juliana is and not let fear about breaks keep the rest of her from growing and being healthy.” Jules’ diagnosis introduced her family to a special group of people they lovingly refer to as their “fragile friends.” In the year Jules was diagnosed, Omaha hosted the bi-annual OI Foundation conference where the Scheopners made their first connections with other OI families. Now the family serves as unofficial ambassadors to outof-town families who travel to Children’s in Omaha for world-renowned care. “We’ve sat in the surgery waiting room with moms, and we’ve held hands and prayed with a mom who was scared sick,” Jessica says. “We’ve enjoyed numerous meals, visits to hospital rooms, and special outings to the zoo and museums. And it’s so wonderful that the children get to spend time with other children who face similar challenges.” Jessica says her family has been successful and able to thrive in this situation because of the support from those who love them and their faith in God. “We are so thankful for the many people who have come alongside us in this journey. We have been blessed by a community of people who pray for us, who have helped us in many practical ways…and by a group of parents and their children with OI all over the country who have become an online family, able to answer questions and help us as we’ve processed what it means to live life fully and with joy in light of this diagnosis SPECTRUM one day and one decision at a time.”
family
• • • • October 2011
familyspectrum •