From the December 2005 issue of Children's Hour.
Ellen (Mechanic) Schlossmann feels cheated.
As a 10-year-old girl growing up in southeast Wisconsin in 1973 with two loving parents and a brother and sister each nearly 10 years her elder, Schlossmann was living a life written about in storybooks. But the headaches that plagued her 20-year-old sister, Bonnie, persisted, and she was ultimately diagnosed with lymphoma.
Bonnie Lynn Mechanic did not live to see her 21st birthday, and the hurt is still evident in Schlossmann's voice. "I remember more about her death than I do her life."
Three decades later, Bonnie Lynn continues to impact her baby sister's life like an angel sitting on her shoulder. Residing on Schlossmann's other shoulder is the memory of her late father, Morrie Mechanic.
"Dad had wanted to do something special to remember Bonnie," Schlossmann recalled. The Mechanics purchased land in Lisbon, Wis., that in the 1980s became the home of Bonnie Lynn Acres.
"It was a place that allowed children with a serious illness to get away, spending time in nature. Their parents had to stay on site as well, but there was always a nurse and other volunteers. Parents and other siblings could go off and do anything they wanted on their own or as a family. It was a way for my parents to help people through difficult times and make wonderful memories with their children."
Bonnie Lynn Acres closed in the mid-1990s. Though Schlossmann's father died in 1997, the example set by her parents for nonprofit, volunteer work set a lasting impression, stronger than she had ever realized.
Benjamin Schlossmann was born a healthy child in 1991 to Ellen and her husband, Michael. Benjamin developed severe stomach and intestinal problems when he began eating cereal at age 4 months. Schlossmann sensed something might be seriously wrong with her firstborn child, but was told his actions were not abnormal. Still, she persisted.
More than three years later, just four weeks after Benjamin's twin sisters were born, his doctor ordered an endoscopy, a procedure that allows a physician to see inside the digestive tract. The results confirmed that Benjamin had celiac disease, which is a sensitivity to a protein called gluten. Those diagnosed with celiac disease must avoid gluten-containing grains, including all forms of wheat, oats, barley and rye.
Like any mother, Schlossmann sought as much information as she could find about celiac disease. She learned was that there was not much to be found.
"There is really no national organization to support families facing celiac disease," she said. "Thankfully, there was a local support group to answer some of our questions and help us learn how to live with celiac."
Avoiding gluten-containing foods is not easy in 2005. But today, families are light years ahead of what the Schlossmanns faced 10 years ago.
"Benjamin would see the Jell-O commercials on television and do the 'Jell-O dance,' wanting to enjoy the dessert like other kids," his mom said. "But before Kraft bought the Jell-O brand, I could not get an answer from the company as to whether the product contained modified food starch, which can come from wheat."
After the Schlossmanns survived the first few "years from hell" as Ellen called the period after Benjamin's diagnosis, she and a local celiac disease support group focused their attention on education – education of each other and the public as a whole to the disease and the importance of listing all ingredients on products.
"Today you can walk into a grocery store and see labels that clearly state, 'This product contains wheat.' It is not perfect, but it is an improvement," Schlossmann said.
The group's efforts received a boost in 1998 when National Football League quarterback Rich Gannon videotaped a public service announcement in Benjamin's classroom. Gannon's daughter also had been diagnosed with celiac disease.
For the next several years, the group hosted a series of fundraisers and gluten-free dinners, each attracting 200 to 300 people, raising money and awareness about the disease. When the volunteers began feeling burnt out, Schlossmann turned to Children's Hospital of Wisconsin.
Our group created the first Going Gluten-Free booklet for parents whose children have been diagnosed with celiac disease."
Researchers and physicians learn more about celiac disease each day. If undiagnosed and untreated, celiac disease can lead to lymphoma, which brings Schlossmann back to Bonnie.
"I think about it all the time," she admited. "Did my sister have celiac disease that was never diagnosed? What are the chances my son will develop other medical challenges? What role does family history play?"
To help answer their own questions – and provide support and understanding for countless other families – the Mechanic and Schlossmann families have generously contributed to Children's Hospital. And Benjamin and children like him are now treated at the Children's Hospital of Wisconsin Bonnie Lynn Mechanic Celiac Disease Clinic.
Ellen's mother, Selma Mechanic, has made her own plans for the Mechanic Celiac Clinic. She has named the clinic as the beneficiary of a most generous gift through her estate plan. The gift is in the form of an irrevocable charitable remainder trust that will one day provide substantial support to the clinic.
"The generosity of the Mechanic and Schlossmann families is inspiring," Rudolph said. "They have taken something that has affected their family and turned it into a positive for themselves and countless other families in the years to come."
"The person who was behind the name was strong-willed and did not give up," Schlossmann said. "Naming the clinic for Bonnie allows us to carry on my sister's name and my dad's dream, to do something positive for people and assist my son."