I magine having a stomachache. Now imagine having it for 24 hours a day, worsening whenever you eat or bounce around. Now imagine having to soldier through your daily life anyway.
This is the struggle that two area grade-schoolers, Victoria Franz of Tonawanda and Zoey Haynes of Gasport, face every day. They are living with Crohn's disease, an illness that affects the gastrointestinal tract. So far, the disease is chronic and incurable, but Victoria and Zoey are living proof that people with Crohn's disease can lead normal lives.
Symptoms may begin with stomach cramps and fever.
"I had very bad stomach pains and I was always sweating in my bed at night," said Victoria, 10, who is a fifth-grader at St. John the Baptist School in Kenmore. "I [also] had no appetite."
Crohn's is often diagnosed with a test called a colonoscopy. Although Victoria and Zoey are quite young, the most popular ages for Crohn's diagnosis are between 15 and 25.
When she was first diagnosed, "I was in the hospital for a week, and I was extremely excited to get out," said Victoria.
Patients who have been diagnosed may take several medications, but they also may need to make changes to their diet.
"I can't eat popcorn and I shouldn't have a lot of greasy foods…it will make me feel worse," said Zoey, 9, a fourth-grader at Royalton-Hartland Elementary School. "[Now I have] hardly any stomachaches."
Zoey also undergoes a form of treatment called Remicade, and she surprisingly enjoys going to the hospital for her infusions of the medication.
"Zoey is a trooper!" said Wendy Haynes, Zoey's mother. "She receives Remicade infusions at Women and Children's Hospital – the staff there is great and they treat her like a princess. She is actually upset when the treatment is over and we have to leave!"
"I can't eat things with seeds or peanuts, which is a bummer, but apples and cantaloupe seem to agree with me," said Victoria, who is also taking some medications that require close monitoring. "Right now I still have stomach pains, but they have gotten better."
Despite steadfast determination to triumph over their struggles, sometimes the girls need some encouragement.
"I always encourage Zoey to be open and honest about her disease," her mom said. "I remind her that she has control over her disease; it does not have control over her. I try to ward off any negative feelings she may have about herself –and encourage her to make the right decisions regarding her diet. And, most importantly, I always remind her that I love her and will always be here for her when needed."
"I get through my disease by trying to distract myself from the stomach pains and telling myself that there are worse things to go through," said Victoria. "And my mom and dad do everything in their power to help me get through it."
At 9 a.m. Oct. 29 in Lockport, there will be a walk to support people with Crohn's disease–Take Steps Walk for Crohn's and Colitis. Colitis is another type of intestinal disease.
"We want this event to bring together people in the community to help raise awareness of both Crohn's and colitis," Haynes said. "The funds raised from these events will go toward research and hopefully bring us closer to a future free of Crohn's."
"Right now I know there is no cure [for Crohn's disease]," Zoey said. "I want to help find a cure for Crohn's because I don't want people who are diagnosed with it after me to have to deal with it as long as I do."
Participating in the walk is also important to Victoria.
"I want to help donate and walk to find a cure for Crohn's. I want to help other people with Crohn's realize that you can still live a pretty normal life," she said.
"[When Zoey was diagnosed], horror set in, knowing that this was a chronic disease and it is something she will most likely never be free of," remembered Haynes. "But we quickly turned that horror into a mission to spread the word about this disease and learn as much as possible about Crohn's and its treatments."
"No parent wants to hear that their child has a chronic illness," added Linda Franz, Victoria's mother. "But it helps to get some explanation for the pain and weakness –and Victoria has found a true friend in Zoey. They understand each other and can talk about anything. For me, Wendy – Zoey's mom –offers a huge amount of support and understanding. We can really lean on each other."
Both Victoria and Zoey offer advice to other young people dealing with the illness.
"If before school you have stomachaches, try not to think about it," advised Zoey. "If you can talk to your friends, then you won't think about it and it will go away."
Victoria agrees. "You don't have to be embarrassed about having the disease. Try to get used to your symptoms, but still talk to your parents [about it]."
"Victoria is a very strong child. She is my hero," her mom said.
… For more information about the
walk and Crohn's disease, visit www.cctakesteps.org or www.ccfa.org .
Allison Franz is a sophomore at Sacred Heart Academy.