Call it a mother’s instinct. Amy Zicarelli had a gut feeling that something just wasn’t right with her newborn son, Luke.
“He would eat and be so unhappy, crying and screaming during feedings,” she said. Weeks later, Zicarelli began to notice blood in her son’s diapers. He was also vomiting frequently after eating.
Multiple doctors told the first-time mom something she already knew: babies spit up. But in their hearts, both Zicarelli and her husband, Mike, believed that there was more to the constant vomiting and diarrhea.
Eventually, the family was referred to Dr. Michael Russo at Children’s Medical Center in Dallas.
“It took us as a family pushing for answers,” she said. “When we got to Dr. Russo at Children’s, he had the patience and sincerity to really follow through on some testing. He took the time to investigate all those symptoms. If that hadn’t happened, it could have very well taken years to discover what was making Luke sick.”
After rounds of testing, doctors finally discovered the cause of Luke’s illness. He was diagnosed with eosinophilic disorder, or EOS, a complex digestive system disorder. Eosinophils, white blood cells, are found in above-normal amounts in specific places in the digestive system and the blood. When the body wants to attack a substance, such as an allergy-triggering food, eosinophils respond by releasing a variety of toxins. These toxins can cause chronic inflammation, resulting in tissue damage.
EOS is a chronic, life-long disorder requiring invasive procedures. Luke has been under anesthesia 28 or 29 times, Zicarelli said. Along with check-ups every three months, Luke sees a play therapist each week at Children’s Medical Center.
The diagnosis placed heavy restrictions on Luke’s diet. Now five, Luke cannot eat anything containing milk, soy, wheat, eggs, fish, or nuts.
“Basically, his body believes that food is a parasite,” Amy said. “It transformed our life overnight. He’s never been to a McDonald’s, he’s never been to a pizza place, he can’t have ice cream.”
“At he has gotten older, at each developmental stage, it’s a new set of challenges and now that he’s aware of his surroundings and himself, our newest struggle has been anxiety,” she said. “He sees a therapist each week to help him through anxieties around food and his perception of himself in general."
For Luke and his family, Children’s Medical Center has become a sort of safety zone. In a world that constantly presents food as a routine part of child’s play, from snack time at kindergarten to treats after soccer games, hospital visits allow the five-year-old to let his guard down.
“There’s a sense of safety for him at the hospital because he knows this is the place where someone is taking care of him,” she said.
The Zicarelli’s are now sharing their positive experiences at Children’s in their new role as the Honorary Chair Family for the annual Family Night at Six Flags, a fundraising event hosted by the Women’s Auxiliary. Since 1962, the Women’s Auxiliary has raised more than $15 million dollars in funds for the hospital. Fun events like Six Flags night, when the park is open just for those who buy a ticket in support of Children’s, help raise money that is donated to the hospital.
This year’s Family Night at Six Flags will be held on Friday, April 20th, from 5 p.m. to 11 p.m. Tickets are $30 in advance and can be purchased at your area's Tom Thumb store or $56.99 (plus tax) at the gate on the night of the event. Proceeds will fund various critical care needs at Children’s. The event is open to the public.
“It’s a really unique evening at Six Flags, it kind of like a private night among people who are supporting such a great cause,” Amy said. “We so appreciate everything that Children’s has done for our family. They’ve gone above and beyond to help us figure out what’s going on. We’re so blessed to have a Children’s Medical Center in the Dallas community."