Philanthropy fuels research innovation to unravel the mystery of rare diseases.
What can a mother do when the thing her baby needs to survive is the very thing that’s hurting him?
Amy found herself faced with that troubling question a few months after introducing her then 9-month-old baby Luke to solid foods.
For most infants and toddlers, trying new foods is an adventure—the greatest challenge being sticky fingers from painting the highchair tray with applesauce or a sour face after tasting peas for the first time. But for Luke, it meant debilitating stomach pain, vomiting and other gastrointestinal issues.
Amy and her husband Mike were beside themselves with worry. They turned to several different doctors in their hometown of Dallas, Texas, for answers. A round of biopsies showed that Luke had unusually high levels of eosinophils—a type of white blood cell produced in the body to help fight disease. Luke’s immune system was treating food like a dangerous foreign invader, but nobody knew why.
“They’d never seen anything like it at that time,” Amy says. “Luke was so sick, and the doctors in Texas didn’t have the resources to help him. But fortunately, they knew who did.”
Luke was referred to Cincinnati Children’s to see our team of experts who specialize in eosinophilic disorders. They traveled with their very sick baby to the medical center, hoping to unravel the mystery and get Luke the care he desperately needed.
Finding the Best Care in the World
Our Cincinnati Center for Eosinophilic Disorders (CCED) is the first of its kind in the United States and a testament to the collaborative spirit we’re known for. Drawing upon the expertise of various specialists throughout Cincinnati Children’s and the University of Cincinnati, we’re working together to bring hope and healing to kids like Luke.
“We started the CCED to discover why some children develop food allergies so severe that it decreases the quality of many aspects of their life,” explains Marc Rothenberg, MD, PhD. “These kids suffer frequent stomachaches, vomiting and diarrhea. They have trouble swallowing and often have to endure life on strictly limited diets.”
As founding director of the CCED, Dr. Rothenberg has been a pioneer in the field of eosinophilic gastrointestinal disorders (EGIDs), catapulting Cincinnati Children’s to become a global leader in groundbreaking research and treatment of these devastating and rare conditions.
In severe cases like Luke’s, treatment is complex and ongoing. His care team discovered he had a build-up of eosinophils in both his esophagus and large intestine, causing inflammation and damage to his system as a reaction to food. This inflammation also affects his airway, causing asthma related to his condition.
Mike and Amy found themselves making several trips from Texas to Cincinnati Children’s every year to get the very best care for their son—care they couldn’t find anywhere else.
“Each visit is a week-long stay with a coordinated care approach,” Mike says. “They check the level of eosinophils in Luke’s system, and we meet with the nutritionist to discuss eliminating or adding certain foods in his diet. An entire team works with us on treatment plans, coping mechanisms and the best options available.”
For Luke, the simple task of eating food is literally a trial. This means eating one type of food every day for three months and then having a biopsy done to see if his body is tolerating it well. At 15 years old, Luke has been in our care for nearly his entire life—and he now has 15 different foods he can eat. He’s also on a feeding tube nightly to get all the other nutrients his body needs.
“Now, there are treatment options closer to home,” Amy says. “But Luke feels safe and understood at Cincinnati Children’s—and we truly believe the work Dr. Rothenberg is doing is the best in the world for this disease.”
The Key to Unlocking Cures: Research Fueled by Philanthropy
When it comes to transforming care for children with rare diseases, science and compassion are equally important. As a nonprofit research and medical center, philanthropy is another critical component in helping us move forward.
“The CCED would not be what it is without the exceptional support it has received from partners like Amy and Mike,” says Dr. Rothenberg. “They’ve provided enabling funds that have truly advanced a number of research discoveries. Luke’s plight, and the courage and strength he is demonstrating, inspire us to continue to do more to develop better treatments and diagnostics for EGID.”
Thanks to their support and that of all our donors, Dr. Rothenberg's team has made major research discoveries, laying the groundwork for clinical advancements such as more effective diagnostic tools and the development of novel therapies, with the ultimate goal of finding a cure.
And Luke’s parents are confident that Cincinnati Children’s will hit that mark. “Dr. Rothenberg and his team have made it their mission to find a cure,” Mike says. It’s a mission that is life-changing—and life-saving—to the tens of thousands of kids like Luke suffering with EGIDs.
“Currently, we’re focusing on uncovering the cause of persistent symptoms, particularly the neuroimmune mechanisms, in patients and conducting studies into the genetic basis of EGIDs,” Dr. Rothenberg says. “This work is helping us better understand these conditions and has led to new treatments and therapeutic strategies.”
Amy eagerly awaits the next big discovery out of the CCED. “It’s so difficult to see your child living in constant pain,” she says. “The donations we've made are going toward studies to figure out the neural pathway that is causing it. I can’t tell you what a life-changer it would be to take that pain away from Luke.”
Donors Double Their Impact as Advocates
Today, Luke is well enough to attend his sophomore year of high school in person and is enjoying being with friends and playing sports. Mike and Amy hope that he’ll be able to leave behind his nighttime tube feedings when it’s time for him to go to college.
“Luke’s come such a long way thanks to the care he’s received,” Amy says. “But he’s endured a lifelong struggle with his condition, and night feedings are difficult and time consuming for him.”
Luke’s parents are doing everything in their power to help their son along the way. In addition to the charitable support they give to advance research, Amy leads a national patient advocacy group in Texas. She also serves as a member of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), an organization that is based at Cincinnati Children’s and is part of a larger network dedicated to improving the lives of individuals with rare diseases.
“We’re hopeful that with our support and the ongoing work of experts at the CCED, advances will be made that allow our child to truly thrive.”
For more information on the CCED, or if you would like to support this important work, please contact Doug Martin at firstname.lastname@example.org or 513-636-1994.