JACKSONVILLE, Fla. – Friends and family of people who struggle with Crohn's disease are spreading awareness and raising money by participating in a walk on Saturday.
While most people don't know much about Crohn's and colitis, a 12-year-old boy who suffers from this debilitating disease is eager to explain it.
Brandon Edu said he was 7 years old and weighed only 40 pounds when he was diagnosed with the debilitating inflammatory bowel disease. Symptoms range from from extreme abdominal pain to diarrhea, along with severe weight loss.
He said while the disease is painful and limiting, it doesn't keep him off the soccer field.
"Keep going and don't give up," Brandon said.
While more than 1.4 million Americans suffer from the disease, most people in Jacksonville first heard about the disease when they learned former Jaguars quarterback David Garrard had Crohn's.
U.S. Rep. Ander Crenshaw, R-Jacksonville, knows the disease well. When his daughter, Alex, was diagnosed 12 years ago, he took his personal battle to Capitol Hill.
"When the child you love is suffering, it doesn't get much worse than that," Crenshaw told Channel 4's Mary Baer. "I started a caucus in Washington among my colleagues to try to raise awareness."
Crenshaw said he worked with the National Institutes of Health to try to get funding for Crohn's research. He said he's encouraged by the progress.
"I've met with some of the doctors that are doing things, and they are excited about the possibility," Crenshaw said. "So it's been a long hard struggle, but that's what it's all about."
While it's not pleasant to talk about her symptoms, Alex Crenshaw does in order to help others with Crohn's and colitis.
"You're not supposed to tell anybody that you have diarrhea or missing body parts because of surgery that you had ... and you're on all kinds of medication," she said. "People just don't want to know and don't want to hear."
Now that she's an adult, she's making it her mission to help others with the disease in hope that kids like Brandon can be freed from the pain of Crohn's.
The "Take Steps, Be Heard" walk will be held Saturday afternoon at the University of North Florida. For more information, to sign up to walk or to sponsor those that are, visit cctakesteps.org/jacksonville.