Patient stories

The story of the Bonnie Lynn Mechanic Celiac Disease Clinic 

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, she was living a storybook life.

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 Ellen’s voice. “I remember more about her death than I do about her life,” she says.

Three decades later, Bonnie Lynn continues to impact her baby sister’s life like an angel sitting on her shoulder. On Ellen’s other shoulder is the memory of her late father, Morrie Mechanic.

“Dad had wanted to do something special to remember Bonnie," says Ellen. So, 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,” says Ellen. “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 Ellen’s father died in 1997, the example set by her parents for nonprofit, volunteer work set a lasting impression.

Benjamin

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 she was told his symptoms 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.

Ellen tried to find as much information as possible about celiac disease. Unfortunately, she learned that there wasn’t much information available. “There is really no national organization to support families facing celiac disease,” she says. “Thankfully, there was a local support group to answer some of our questions and help us learn how to live with celiac disease.”

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. They wanted to educate each other and the public as a whole on the disease and the importance of listing all ingredients on product labels.

“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," says Ellen.

The group’s efforts received a boost in 1998, when National Football League quarterback Rich Gannon, whose daughter had been diagnosed with celiac disease, videotaped a public service announcement in Benjamin’s classroom.

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, Ellen 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," says Ellen.

Researchers and physicians learn more about celiac disease each day. If undiagnosed and untreated, celiac disease can lead to lymphoma, which brings Ellen back to her sister Bonnie.

"I think about it all the time," she says. “Did my sister have celiac disease that was never diagnosed? What are the chances that my son will develop other medical challenges? What role does family history play?”

Bonnie Lynn Mechanic Celiac Disease Clinic

To help answer their own questions — and provide support to countless other families — the Mechanic and Schlossmann families have generously contributed to Children’s Hospital. And Benjamin and children like him are now treated in the Bonnie Lynn Mechanic Celiac Disease Clinic, which is part of Gastroenterology.

Ellen’s mother, Selma Mechanic, has made her own plans for clinic. She has named the clinic as the beneficiary of a very 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.

“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,” says Ellen.