Playing up support for youth with Crohn's Sixth-grader's original play will benefit girl, 5, battling chronic disease BY JESSICA SMITH Staff Writer Alexis Vanore, 5, of Old Bridge, pictured with her new cousin Addison, has been hospitalized several times since being diagnosed with Crohn's disease three years ago. OLD BRIDGE - With Alexis Vanore in kindergarten and Amanda Mulligan in sixth grade, it might seem the two youngsters live in "Two Different Worlds." Their mothers, long-time close friends, serve as the girls' connection, which has made Amanda aware of Alexis' illness - Crohn's disease. Seeing her younger friend brave the suffering involved with her health problem inspired Amanda. After writing a play, the sixthgrader got an idea. "When I wrote the play, I showed it to my mom and she liked it, so I decided to do it to raise money, and to help Alexis," Amanda said. The girls practice the play, "Two Different Worlds," each Saturday and Sunday. They created the set, made their own props, and are working on making costumes for their performance. Amanda's mother, Lori, said the actors are trying to spend as little as possible on the production, so that all of the money raised can go to Alexis. "We're still practicing, but we basically have the whole thing down," Amanda said. Amanda left no stone unturned in her efforts, typing up permission slips for each child in the cast to give to their parents, and even securing a venue for the performance. Set for May 9 at 8 p.m. at the President Park Firehouse, 5 Roosevelt Blvd. in Parlin, the play will allow theater-goers to enjoy some entertainment they can feel good about. Tickets are $5. "[I'm] amazed," Lori said. "This is not out of character to do stuff like this, but it's just the fact that she pulled all this together. It bothers her that Alexis is so sick." Aileen and Joe Vanore knew something was wrong when Alexis was 2, and they found blood in her stool. A doctor performed a colonoscopy, and his prognosis was far from encouraging. "He ended up saying she was above and beyond him, and he was supposed to be one of the best doctors,"Aileen said. Since her diagnosis with Crohn's disease, Alexis has spent time in Robert Wood Johnson University Hospital in New Brunswick, and the Children's Hospital of Philadelphia on a number of occasions. She has endured five colonoscopies and endoscopies, as well as taking steroids and other medications that simply did not work. For a year,Alexis had a feeding tube in her nose, because her body could not handle food. Crohn's disease rarely strikes in children,Aileen said, which makes it difficult for doctors to know if the drugs that work for adults with the disease will be effective, or safe, for Alexis. "They have to keep a close eye on her," Aileen said. Achronic illness, Crohn's disease causes inflammation of the gastrointestinal tract, typically in the area of the small intestine and colon. Last year, relief came for the family whenAlexis' blood counts improved, and the disease went into remission. According to Aileen, remission can last five to six years for some. Alexis has not been so lucky. Though the 5-year-old's health is not as bad as it was, she still has painful flareups regularly, Aileen said. "Sometimes, she lasts at school for an hour, and then she has to come home, because the belly pain is so bad," Aileen said. In addition to the debilitating stomach pain, Alexis suffers from joint pain, mostly in the area behind her knees. Extreme fatigue is another malady she faces. Aileen and Joe are as open as possible with their daughter regarding her health issues, and Alexis understands a lot of it, Aileen said. "She always says she has a silly belly, because her belly always hurts her," Aileen said. "She's an amazing child." Alexis' parents are not the only ones who think she is amazing. Last year, she was awarded with the title of "Little Miss Courage" during her dance recital atAStep in Time, where Amanda also dances. Alexis leads a busy life, even for a healthy 5-year-old. She dances tap and ballet, and does gymnastics atAStep in Time, where her team won first place in a competition; attends kindergarten at Wilson Elementary School in Sayreville; and belongs to a Daisies troop with the Girl Scouts of America. Prior to one of her dance recitals, doctors wanted to admit Alexis into the hospital. Knowing hospitalization was not necessary, Aileen and Joe refused. They knew how disappointed Alexis would be to miss her big event, Aileen said. According to Aileen, Alexis even participated in all of her activities while she had the tube in her nose. "Here's a child with a tube up her nose, going to the bathroom about 30 times a day, and she's running around with the other kids like nothing's wrong with her,"Aileen said. Aileen and Joe have another daughter, Ashley, 3. Though the special care Alexis requires combined with keeping up with a toddler could prove daunting, Aileen said Ashley is a great helper. She brings her big sister toys and books when she is not feeling well, and cheers her up by making jokes. "I think Ashley keeps Alexis going," Aileen said. For three years, Aileen and Joe have been involved with the Crohn's and Colitis Foundation of America, a nonprofit organization with the goal of finding cures for both diseases.An annual walk in Belmar raises funds for the group's research efforts. Last year, the walk raised $5,000, Aileen said. This year's 5K walk is scheduled for June 1. Registration begins at 5 p.m. at Taylor Pavilion on the Belmar boardwalk. For more information or to pre-register, visit www.cctakesteps.org, or call (732) 786-9960.