Rare digestive disorder also affects Livonia siblings
By Bonnie C. Vaughn | Special to the County News
In response to a letter written to the Livingston County News about a month ago regarding a child in the Livonia area diagnosed with Eosinophilic Esophagitis Disorder, I would like to tell you of my great niece and great nephew who have also been diagnosed with this disorder.
When Cortni Lynn Germano was five years old her parents learned that she had an incurable disease called Eosinophilic Esophagitis otherwise known as EE or EOE. Cortni is now 13 years old and for the last two years she has been treated at the Cincinnati Children’s Hospital.
Then, about a year ago her brother, Michael Germano, began showing symptoms of the disease, was tested and it was discovered that he, too, was suffering from the same disorder.
Eosinophilic Esophagitis is a rare chronic digestive disorder in which the eosinophils (a type of white blood cell) infiltrate the esophagus. It reacts rather like an allergic reaction of the tube carrying food to the stomach.
At this time there is no known cure. EOE is a fairly new disorder since prior to 1990 it was virtually unheard of and since it mimics other disorders it is sometimes hard to diagnose in a timely fashion. It seems to be found more frequently in males than in females.
The symptoms include but are not limited to: food impaction, reflux, weight loss, poor growth, abdominal cramping, chest pain, sleeplessness, poor appetite, strictures to the esophagus and nutritional deficiencies. These symptoms occur regularly with the Germano children.
Every 10-to-12 weeks Cortni, Michael and their parents, Jackie and Brian Germano travel to Cincinnati for testing and treatment. Cortni began her treatment at Strong Memorial Hospital but two years ago Strong sent them to Cincinnati Children’s Hospital since it was better qualified to deal with this disorder.
Cortni is taking nine different medications daily and follows an extremely restricted diet consisting mainly of rice, potatoes and baby formula. Her esophagus is only working at 25 percent. Michael is taking three medications daily and is allowed no eggs or milk and is lactose intolerant
In spite of their rigid medication and diet schedules Cortni and Michael are very active. Cortni is on the junior high honor roll at Livonia Central and participates in cheerleading, dance, zumba and enjoys spending time with her friends.
Michael plays football, lacrosse, soccer and wrestling. He is most happy when playing on his trampoline or playing with his dogs. They both have a wonderful support group of friends and family who take their disorder in stride and make them feel comfortable.
At 13, Cortni is well aware of the drastic measures that may take place in her future due to this disease. If, during her regular visits to the Cincinnati Children’s Hospital, the doctors should find that the capacity of her esophagus is further reduced, she may be subjected to having a feeding tube inserted and/or undergo a 12 hour surgery to stretch her esophagus.
This entails inserting a number of rods into her esophagus and trying to stretch it so that she will have a higher percentage of use. She would undergo lengthy physical therapy to reteach her how to swallow solid foods again.
This is by no means a cure but a method in which the doctors would be able to increase her ability to eat what few foods are allowed in a more normal fashion. There is no guarantee that either one of these methods would have long term positive effects.
Aside from the difficulty in trying to be “normal” kids with an abnormal disease, Cortni and Michaels’s parents have the added burden of paying for medications that insurance won’t cover (roughly $225 per month), renting a reliable car for their journey to Cincinnati every three months, paying for a room since they cannot drive to Cincinnati, go through the comprehensive testing and drive back all in one day.
Brian must lose at least two days from work each time they travel, not to mention the cost of food. Jackie and Brian strive to make their kids comfortable within the confines that the disease dictates. It is not always easy since both children often find themselves exhausted from doing things that most kids their age take for granted.
Not once have I ever heard either one of these children complain about EOE. Most of the time, they are active, happy kids looking forward to the next great adventure awaiting them. They are truly an inspiration to me and they make their parents proud daily.
I felt that it was necessary, since the article mentioned two other children within the school district who were afflicted with this disorder to let you know about these remarkable kids and their parents.