Dallas Families Unite With Hopes To End Suffering Caused By Eosinophilic Gastrointestinal Disorders
Zeke, age 16, inspired by young friend’s battle with the disease
Friday, September 10, 2010
Amy and Mike Zicarelli and Cindy and Frank Angel found each other through a support group for their sons’ shared diagnosis of eosinophilic gastrointestinal disorders (EGIDs). Zeke Angel, diagnosed at the age of 13, was so moved by the strength and courage of young Luke Zicarelli – who has been battling his disorder since birth – that he wanted to help fund research for a cure. Together, the families raised more than $170,000 through the First Annual Angels for Eosinophilic Research Golf Tournament and PAR-TEE for the Cure, which was held in May in Dallas. A video of pictures from the events can be seen at www.angelsforeos.org.
Children with EGIDs are severely allergic to food, often to nearly everything they eat. Food is like poison to their bodies, and every meal is a reminder of their life-long battle.
“I thought I was alone with this disease,” says Zeke, now 16. “Luke was the first other child I met who was going through it too. He was only 3 and has the disease all through his digestive track. But I’ve never heard him whine about it. He’s such an inspiration to me.”
Children with EGIDs are often diagnosed in their first year of life with growth and development problems, daily vomiting and irritability. Later, these children develop chronic abdominal pain and difficulty swallowing. Many require frequent emergency services. Some patients with EGIDs respond to steroids or to severely restricted diets, but many children are limited to liquid feedings through a tube placed directly into their stomach.
“There is so much you can’t control with this disease,” says Amy Zicarelli, mother of Luke. “We try our best not to get caught up in all the daily medications and food restrictions. We can’t change that right now. Instead, we try to focus on what we can do: raise money to fight this disease.”
The first-year event included a gala dinner, silent auction and golf outing – all planned and organized by the two families. Clearview Investments and Ennis Steel Industries were title sponsors for the event. Additional support from the Dallas community and from around the country helped the families raise an amazing amount of awareness and support in their first year.
Proceeds from the event were donated to the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital and Medical Center, the international leader in caring for patients with these conditions and researching a cure. The families were referred to the Cincinnati center by their local gastroenterologist, Dr. Russo, who serves as the medical advisor for the Dallas eosinophilic support group.
“We were thrilled with the first-year results of the event,” says Cindy, mother of Zeke. “It was not only a successful fundraiser, but the event really helped educate people about the emotional and physical tolls of this rare disease. It’s important for people to understand the willpower, character and faith kids with this disease have to have.”
EGIDs, which can affect the esophagus, intestines and/or colon, are increasingly being recognized and are a growing medical problem. Current treatments have variable effects on improving disease pathology and symptoms, but the disease flares upon stopping therapy.
“Alleviation of patient suffering from these perplexing disorders is dependent upon research,” says Marc Rothenberg, MD, Ph.D., director of the Cincinnati Center for Eosinophilic Disorders. “The substantial and wonderful gift from the Angels for Eosinophilic Disorders will accelerate the cutting edge research designed to best treat and eventually cure these disorders.”
Dr. Rothenberg’s studies are focused on deciphering the causes and developing treatment for allergic diseases. He is particularly focused on unraveling EGIDs through fundamental, translational and clinical research studies aimed to best treat and cure this disorder. He has received many awards in recognition of his contributions to the field, the most recent being the prestigious MERIT award from the National Institutes of Health.
“The folks in Cincinnati really know what they are doing,” says Mike Zicarelli, who is already looking forward to next year’s Angels for Eosinophilic Disorders event. “We will do our part and keep holding on and raising money because we know they are working for a cure.”
“The way in which the money was raised, driven by two incredible young patients, Zeke and Luke, and their wonderful families is inspirational and motivational to our research and clinical team,” concludes Dr. Rothenberg.
The date for next year’s event will be announced soon at www.angelsforeos.org.
About Zeke Angel
Zeke was not diagnosed with an EGID until his twelfth year of life. Until that time, he had been eating a normal childhood diet. Concerns about his growth and energy level led to his diagnosis. Zeke’s EGID is in his esophagus, known as eosinophilic esophagitis. Despite his disorder, Zeke is a dedicated hockey player. He has been playing for 10 years. Zeke is entering his sophomore year of high school. His mother recently quit her job to home school Zeke in hopes of helping him better balance the demands of school, hockey and a teenage social life. Zeke is interested in becoming a doctor and plans to work in Dr. Rothenberg’s lab in the future.
About Luke Zicarelli
Luke is a fun-loving 4-year-old who has lived with severe digestive problems since birth. He was referred to Cincinnati Children’s at age 2, where he was diagnosed with an EGID in his esophagus and colon. Luke does not complain about his medications or food restrictions, yet if asked, he will tell you that his “tummy hurts every day.” Luke’s parents know he carries an immense emotional burden for a child his age. Luke has an adoring little sister named Lyla who calls him “Buddy.” Lyla will only eat what “her Buddy” can eat. Luke loves swimming, fishing and playing Super Mario on his Wii, but most of all loves being with his friends at the Lamplighter School.
About the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s
The Cincinnati Center for Eosinophilic Disorders (CCED) at Cincinnati Children’s Hospital Medical Center is the international leader in caring for patients with these conditions and in researching the cure. Their multidisciplinary team has extensive experience with these rare disorders and an intense interest in their effects on health and their impact on individuals and families. The CCED is the only center in the country that brings together experts in allergy/immunology, gastroenterology, social work, nutrition and pathology to evaluate, treat and study these chronic medical problems in children with such focus and expertise.
Cincinnati Children’s is one of only 10 children’s hospitals in the United States to make the Honor Roll in U.S. News and World Report’s 2009 edition of America’s Best Children’s Hospitals issue. Cincinnati Children’s is ranked as the best children’s hospital in the nation for digestive disorders. For its achievements in transforming health care, Cincinnati Children’s is one of 6 U.S. hospitals since 2002 to be awarded the American Hospital Association-McKesson Quest for Quality Prize for leadership and innovation in quality, safety and commitment to patient care. The hospital is a national and international referral center for complex cases. Additional information can be found at www.cincinnatichildrens.org.