Zane Abdelsadek has a busy schedule these days. In addition to a full day of school, the first-grader's daily itinerary may include running around the neighborhood, digging for worms, playing Power Rangers, trampoline jumping or karate. He is also an avid reader of Harry Potter books.
With an action-packed schedule and spritely demeanor, Zane comes across as a typical 6-year-old.
Only when mealtime comes around does his routine markedly differ. While most of his peers sit down to eat with relatively little thought and concern, Zane requires a much more deliberative, complicated approach. At any time, most of a typical menu is off-limits to him.
Zane has eosinophilic esophagitis, an allergic inflammatory disease that manifests itself through an elevated number of eosinophils -- white blood cells that fight off harmful foreign substances -- in the esophagus. In people with EE, eosinophils treat food as an antagonist. Common symptoms include difficulty swallowing, reflux, food getting stuck in the esophagus, nausea and vomiting, abdominal or chest pain, limited appetite, poor growth, malnutrition and weight loss.
The disease does not have a cure. But Zane's parents said neither they nor their son dwell on its disruptive impact and likelihood of persisting many years.
"He's basically a normal kid with an abnormal condition," said Zane's mother, Nancy Mahmoud.
EE is rare, but its prevalence has increased to an estimated 1 in 2,000 people, according to the American Partnership for Eosinophilic Disorders. The disease affects all ages and ethnicities, but more commonly afflicts males. Zane's 4-year-old sister, Selma, for instance, does not exhibit any signs of EE.
To raise money for research and increase public awareness, Zane's father, Mohamed Abdelsadek, is planning to climb the 19,340-foot Mount Kilimanjaro in Tanzania in July 2014 with a team of more than two dozen.
"This is a new disease, and obviously with any new disease, you have to create awareness in your community and around the country," said Abdelsadek, the global head of strategy for GE Capital. "We're going in the right direction, but there's still a lot to be done to get us where we need to be to help children with this disease."
His fundraising goal for the climb is $20,000; so far, he has accumulated contributions totaling about $13,000. That money will benefit the nonprofit CURED, which is seeking to find a cure for eosinophilic disease.
Life with EE
EE presents daily and substantial challenges for Zane, who was diagnosed with the disorder when he was 1 year old.
He relies on medical food known as elemental amino acid formula to provide most of his nutrition. While it can be taken orally, the food's unappetizing taste and smell make it difficult to swallow. Instead, Zane ingests the specialized formula through a gastrostomy tube known as the Mini ONE Button, which is anchored by an apple-shaped balloon in his stomach.
Steroids, meanwhile, allow him to eat a limited number of foods, such as bread, rice, pasta and certain sugary products such as cotton candy.
Unsurprisingly, EE poses challenges for a lively 6-year-old.
"I was a little upset," Zane said of missing out on cake at a recent birthday party. "The cake is the best part of a birthday party."
As an apparent result of EE, Zane also has developed a heightened sense of smell. Mahmoud attributes this trait to her son's highly restricted diet, as well as possible psychosomatic influences. When he was younger, he would become nauseated by the scents in a grocery store. With practice, his parents have developed routines for him to manage his olfactory sensitivity.
Zane, nonetheless, maintains a consistent schedule at Long Lots Elementary School by putting on several times a day a pack that contains a bag of medical food and an automated pump. The bag connects to his Mini-One button, allowing him to take feedings while he is in class.
"He rarely gets bothered by having the button," said Alicia Casucci, the school nurse who prepares his medical food each day. "He's a happy, active first-grader, who has friends. EE is something that he has to live with, and he handles it very maturely."
Medical food costs quickly mount for those with EE. Based on his current intake, Zane goes through about 360 cans of medical food in a year. Those expenditures, along with outlays for his feed kits and Mini ONE buttons, come to approximately $47,000 per year. Insurance covers 70 percent, which still leaves Zane's parents accountable for about $14,000.
Advocating for change
Since the family moved to Westport last year, Mahmoud has become a prominent voice for families grappling with EE. A stay-at-home mother and former lawyer, she is a member of Thrive!, an advocacy and support group for individuals with conditions that require dietary restrictions. The organization backs wider coverage of medical food for individuals with gastro-intestinal disorders such as EE.
While a self-insured plan covers Zane's medical food, others with EE in the state who do not have similar coverage face the prospect of shouldering massive out-of-pocket costs.
To mitigate those expenses, Westport state Rep. Jonathan Steinberg introduced this a year a bill that would have required coverage of specialized formula up to age 26 for individuals with EE.
"We're talking about something like 50 families in the state," Steinberg said. "From the dollars and cents standpoint, it wasn't much of a liability."
Mahmoud and Abdelsadek said they remain focused, meanwhile, on advocating for more research of causes and treatment of the disease. Many leading researchers' recent findings attribute EE's emergence to both genetic and environmental factors.
"I hope people stop to think about and question our food production and question food chemicals being put in our environment," Mahmoud added. "I believe that kids like Zane are the canaries in a coal mine. They are getting sick. What is causing this?"
Zane also has lofty hopes for research that might find a cure. After a recent afternoon exploring neighbhood woods with he said, "I do not like this disease.
"I wanted it to be cured."
To make donations for the Mount Kilimanjaro climb, go to: http://bit.ly/14U9BN0