The odds are that you’ve never heard of Eosinophilic Esophagitis. I know I sure never heard of it until a close friend of mine had a beautiful baby boy born with the illness. The chronic condition, which has no cure, is a rare illness that causes kids to be unable to eat to all kinds of foods—not just a single nut or milk allergy, but one to all kinds of fruits and vegetables.

To explain EE, the organization CURED, or Campaign Urging Research for Eosinophilic Disease, puts it like this: “Eosinophils are white blood cells that are usually in the bone marrow. With EE, the eosinophils attack the digestive system.” This causes severe pain, especially in the chest, which lasts for days. Some people who have it also are born with several allergies, such as specific foods as well as outdoor elements (like trees) and pets. Can you imagine being a kid and not being able to come into contact with any of these things? As a fruit lover with a long history of pets and outdoor play, I can’t, myself.

Kids with EE are routinely in the ER or doctor’s office, getting scopes done to check out their systems while missing out on their childhoods. I’ve heard so many horror stories from the mother I know and her network of other EE parents and families that I can only marvel at the strength of these poor kids. And the thing is, most doctors seem to have no idea how to treat the disease due to its rarity, causing patients to have to seek out specialists, often very far from home.

On Saturday, September 18, my dear friend and many others involved in EE research—particularly families with children who have EE—are walking for a cure. The walk will take place at the Life Times Fitness center located in Ellisville, Missouri. People who register before September 1 will receive a free t-shirt, and all proceeds go toward research in finding a cure.

If you live in the St. Louis area or in a surrounding state, I hope you can join in this good cause. If not, you can always make a donation toward a cure as well, which is always very much appreciated. Please visit the Cured Foundation website for more information about the walk as well as the disease itself. You can view items for purchase in the gift shop as well as read about what it’s like for the patients of this disease on a daily basis.