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She had a fever, abdominal pain, vomiting and a collapse of energy. Her color drained from her face and her stool was bloody. Doctors quickly learned that Mia Davis’ entire digestive system had ground to a halt, and she was losing blood through terrible ulcers in her colon. Davis’ condition deteriorated so rapidly that it took a blood transfusion just to stabilize her and boost her strength enough to handle initial treatments and exploratory procedures. “I didn’t know what was happening to me,” says Davis, who recently turned 11 and speaks with remarkable poise and clarity about her harrowing experiences while a pet hamster climbs around in her lap. “On my first night in the hospital, I just stayed up. All night. I was afraid to go to sleep.”
    Three agonizing weeks went by in the hospital before doctors finally arrived at a diagnosis: Crohn’s disease.
    Crohn’s disease is an inflammatory disease of the digestive tract, and there is no known cure for it. It is an autoimmune disease, meaning that the immune system turns against its own body and attacks. In the case of Crohn’s disease, the immune system might attack anywhere along the entire digestive tract, from the mouth to the anus, causing a wide variety of symptoms. Primary symptoms are abdominal pain, diarrhea, bleeding, vomiting, weight loss and fever. It is a wide-ranging and unpredictable disease, and other common complications include skin rashes, arthritis and inflammation of the eyes. In Davis’ case, her eyesight has deteriorated to the point where she needs glasses, arthritis grips her hands and joints frequently and her growth has been stunted by the disease. “My feet haven’t grown for three years,” she explains. She holds out three fingers for emphasis. “Three years.”
    One of the startling things about the disease is how few people are aware of it. According to the Crohn’s and Colitis Foundation of America, 1.4 million Americans have the disease. That is more than double the number of Americans who have multiple sclerosis, and yet the level of awareness of Crohn’s is shockingly low.
    Once they had finally learned the nature of the disease they were fighting, Davis and her mother realized their struggle had just begun. The disease strikes each victim differently, so it can take months and years to figure out effective and precise combinations to counter the illness. Regimens of drugs, steroids, diet, exercise and therapy have to be developed and monitored. Before she had reached her 11th birthday, Davis had been to the emergency room more than a dozen times. She developed the skills of a medical dietician, memorized the scheduling and administration of a host of medications and learned to self-administer steroid enemas. “My baby girl had to grow up fast,” her mother Lorraine says.
    In addition to the physical struggles, Davis, who’s a gifted student at Ben Franklin Elementary School, was having obvious difficulties continuing her education. School officials took extraordinary steps to accommodate her unpredictable condition and help her keep up academically. When Davis went weeks unable to eat solid food, for example, teachers and officials made arrangements for her to attend school even while a feeding tube snaked out of her nose and was taped to her top lip. “Kids asked me about it,” Davis says of the most recent experience. “But it wasn’t so bad. They treated me pretty much the same.”
    Last summer doctors told Davis and her mother about a children’s camp run by the National Crohn’s and Colitis Foundation of America, called Camp Oasis. Staffed by doctors, health professionals and volunteer counselors, the camp aims to help children affected by Crohn’s disease or any variation of irritable bowel disease (IBD) have a wonderful – and normal – camp experience surrounded by peers and supported by a program and staff dedicated to meeting their special needs. Davis had a great time. “There was a pool. There was a zip line. We did arts and crafts and cooking. And on the very last day, we had a theater contest where we all were in different plays.” What was it like being around other kids with Crohn’s disease? “We could laugh,” Davis says, “at all the different things we have to do. We didn’t talk about our pains as much – that would make us pretty sad.”
    Camp Oasis is just one facet to the work of the Crohn’s and Colitis Foundation’s work. The volunteer-driven organization works tirelessly to raise money and awareness for medical research, support groups, education programs and children’s camps and facilities. The foundation receives five stars, the highest rating possible, from the American Institute of Philanthropy for their effectiveness in utilizing the funds they raise. More than 80 cents of every dollar goes straight to supporting those programs.
    Coming up, Sunday, June 7 is the annual “Take Steps for Crohn’s and Colitis” fundraising walk and celebration. Thousands of walkers at 80 locations across the country will step into athletic shoes and walk in support of those with Crohn’s and Colitis. The event is one of the most important annual fundraisers for the organization and all the people it supports. In New Orleans the event will be held at Audubon Park and will include music, food, Plum Street snowballs, a space walk and children’s activities. Anyone interested can sign up or find more information by visiting www.cctakesteps.org/neworleans.
    Davis is determined to see a cure discovered for Crohn’s disease. A talented student and artist, she not only draws, sculpts and plays the piano, but she excels in science as well. “I want to be a scientist for NASA,” she explains. “If they can’t find a cure on Earth, maybe on Mars or in outer space they can find the right elements.”    

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