Miles and Devon may look like your normal 12 and 10 year olds on the outside. But they both spend their days dealing with a rare autoimmune disorder called Eosinophilic Esophagitis (EoE).
Devon was diagnosed at one year old after being very sick and has gone through many "food trials" since then. At 10 years old now, she still goes through food trials where she trials a food for 3-4 months and then goes under anesthesia for an upper endoscopy to find it if the food stays, or goes. Devon has approximately 16 foods in her diet today thanks to a swallowed steroid that she swallows twice a day called Budesonide. This allows her body to not “detect” the food in her esophagus and attack. Devon is a happy, energetic, competitive 10 year old gymnast who realizes that she doesn't eat the same as everyone else and it's tough for her at times. Devon continues to go through food trials and endoscopies in the hopes of adding more foods to her diet in the future.
Miles continues to do well on his diet thanks to the swallowed Budesonide twice a day. We tried about a year ago to go down to once a day with medicine but he immediately started having chest pain and the feeling of food being stuck. Miles is a happy, active 12 who has become very active on a swim team and water polo team.
But we still need a cure for this in order for our children and children everywhere to live a life without taking medicine to eat. To live a life without the fear and anxiety of not being able to eat foods that they see their friends and family eat. And we can't do it without the love and support from our friends, family and co-workers.
In honor of National Eosinophil Awareness Week, we ask that you consider making a contribution in support of the research being done by Drs. Liacouras and Spergel out of Children's Hospital of Philadelphia. All funds donated will go directly to the research to both find a cure for EE and to find a less invasive way to determine the level of eosinophils present in the esophagus.
Thank you for supporting our cause,
Michael, Robyn, Miles and Devon Conn
What is Eosinophilic Esophaghitis?
EoE is a rare autoimmune disorder that is is characterized by a large number of white blood cells, called eosinophils. Eosinophils cause life-threatening problems when they appear in high quantities in areas other than the blood and intestine.
In EoE, the body’s own white blood cells attack the esophagus in response to certain foods. The condition causes inflammation of the esophagus, nausea, abdominal pain and difficulty swallowing. It can be diagnosed only through an upper endoscopy to examine a tissue sample from the esophagus, and the allergy-causing foods have to be identified by an elimination diet. EoE reactions can take days and even weeks, making it very difficult to diagnose and identify food triggers.
There is no known cure for EoE yet but researches are working hard every day to find one. The Center for Pediatric Eosinophilic Disorders at CHOP is one of the largest programs in the country dedicated to researching and treating EoE. CHOP estimates 1 in 1,000 kids is suffering from an eosinophilic disease.
Currently, CHOP treats 1,500 infants, children and teenagers from all over the U.S. with eosinophilic diseases — the largest clinical population in the world. CHOP researchers Chris Liacouras, M.D., and Jonathan Spergel, M.D., Ph.D., have identified a genetic risk factor for EoE, uncovered the role of food and pollen allergies in EoE, and created allergy testing for the condition. These advances offer high hopes for all children who are suffering from this condition.
If you'd like to send a check, please make it out to "CHOP" with "Miles and Devon Conn" in the memo to the below address:
CHOP Foundation P.O. Box 781352 Philadelphia, PA 19178