A 3-year-old Oklahoma City girl is living with a condition called eosinophilic gastroenteritis that makes her allergic to nearly all foods.
Those who know Riley Kahn and her parents, Mike and Jill Kahn, are familiar with the toll it is taking on their family as she depends on a feeding tube for nourishment.
The public is generally unaware of this poorly understood condition that as of now has no known cause or cure. In an effort to change this, friends, family and strangers recently held a run that raised nearly $50,000 for awareness and funds for research. “Riley's Run” was a 5k and 1-mile fun run hosted by Oakdale Elementary School in northeast Oklahoma City.
“It's been completely humbling, overwhelming and amazing. Words can't express the way we feel right now,” Jill Kahn said. “We're just so overwhelmed by all of the support, love and care. It definitely gives the community hope.”
Race day also featured fun activities for the whole family, including a silent auction and Kids' Fun Zone, with inflatable bounce houses, snow cones, cotton candy, finger printing, face painting, and a ribbon house.
The Oklahoma City Police and Fire Departments gave a strong showing of support as well.
Officer Chad Peery led both the effort and the race, bringing lots of fellow officers along with the bomb squad's mobile command unit and robot, a Special Weapons and Tactics armored vehicle and the Air One police helicopter.
Riley's condition, eosinophilic gastroenteritis, is just one of a group of diseases known as eosinophilic disorders. Even though specific diseases within this group affect different aspects of the body, they are all are characterized by the accumulation of eosinophils, a certain type of white blood cell that is responsible for producing allergic responses.
Many patients suffering from these misunderstood disorders go undiagnosed for years. However, even those with a diagnosis like Riley continue to struggle to control the debilitating symptoms of a disease with few effective treatments and no known cure.
Mary Catherine Sexton, Riley's Run director and friend of the family, hopes that the money raised for research will someday allow Riley to do something that most of us take for granted.
“Riley's family is like family to me,” she said. “My daughter is Riley's best friend, so I see their struggles. Eosinophilic disorders don't have any federal funding for the research needed to find a cure. My goal is that Riley will be able to eat a piece of wedding cake on her wedding day.”
Riley's Run will be held annually and all proceeds benefit APFED, the American Partnership for Eosinophilic Disorders. For more information about Riley's Run, APFED, eosinophilic disorders, or to make a donation, visit www.RileysRun.com.