Rillton teen tapped as 'Honored Hero'
Kaylee Aaron of Rillton is a fighter – a teenager who has remained active at Yough High School, participating in cheerleading, the student musical and student council, despite battling a painful intestinal disorder the past three years that drains her of energy and can make her daily life difficult.
The 15-year-old Aaron, who will be entering 10th grade in the fall, is dealing with the challenges maintaining “A” grades in high school while at the same time undergoing treatment for Crohn's disease, a painful autoimmune disorder that attacks the digestive track, causing abdominal pain, diarrhea, fever and weight loss.
“Every day is different. I just try to persevere. So far, there's no known cure,” said Aaron, remarking that there are some days when she has to struggle to get through the day because the disease has sapped her energy.
Aaron's efforts to raise money for the Crohn's & Colitis Foundation of America and raising awareness about Crohn's disease led to her selection as the “2014 Honored Hero” of Pittsburgh Takes Steps for Crohn's & Colitis, a one-to-three-mile fundraising walk held June 8 at Carnegie Mellon University's campus in Oakland.
“I was surprised I was selected,” Aaron said.
The Yough High School student was named the honored hero for Western Pennsylvania/West Virginia Chapter of the Crohn's foundation because “she's done a really good job to raise money to support the cause,” said Lori McCann, manager of the Pittsburgh Takes Steps walk.
About 700 people participated in the June 8 walk, which raised more than $200,000, McCann said. The foundation's website says that 80 cents of every dollar raised goes towards research, public and professional education, and patient support services in communities.
Aaron shared her story with participants in the walk, which included a group of her family and friends, said her mother, Robyn Aaron.
“She did a really nice job,” McCann said.
For Aaron, fighting the disease means taking 22 pills a day and 28 on Fridays when she takes a weekly dose of methotrexate to treat arthritis. She gets injections of Humira once every two weeks to fight Crohn's and rheumatoid arthritis. Her medication has varied over the past 2 1⁄2 years.
“Having Crohn's disease has not stopped me from living my life and it has not made me feel bad for myself. It has taught me that I have it fairly easy compared to tons of other people in the world,” Aaron wrote in an essay for the Crohn's foundation. “Each day I fight and make sure to never give up,” she wrote.
Aaron has not had a “severe flare-up” since November 2012, but the disease is not yet in remission. Unfortunately, Kaylee has recently had “a rough few months,” Robyn Aaron said.
If the disease is mild to moderate, it can be controlled very well with medication, said Dr. Rupam Sharan, a gastroenterologist with Excela Health in Greensburg.
The downside of taking medications that suppress your body's immune system is that it affects your ability to fight other diseases, Sharan said.
Because of her health problems, Aaron has had to drop some of her activities. The rheumatoid arthritis forced her to quit playing softball, which she said was a huge part of her life, because of the joint pain. She was playing catcher, which strains the knee joints because the catcher squats behind the plate to catch the pitch.
‘It can be a very severe disease and can severely affect the quality of life,” of the person suffering from Crohn's, Sharan said.
Aaron is among about 1.4 million Americans suffering from Crohn's or colitis disease, and one of the 140,000 Americans under the age of 18, according to the Crohn's & Colitis Foundation. She began suffering from the intestinal pain caused by Crohn's disease in May 2011. She developed severe stomach pains, was fatigued and suffered from internal bleeding. She spent 17 days in Children's Hospital in Pittsburgh, undergoing a multitude of tests before being diagnosed with Crohn's disease.
Sharan said it is believed that Crohn's disease is caused by both environmental and genetic factors. Researchers are working on identifying genetic markers for the disease, as well as finding favorable bacteria to help heal the disease and to keep it in remission.
Kaylee's maternal great-grandfather who is in his 80s, was recently diagnosed with Crohn's disease and her brother, Hunter, 13, has undergone tests for his own intestinal problems, Robyn Aaron said. Robyn Aaron said one of her cousins was diagnosed with Crohn's disease at age 14 and is now 30.
Despite all her daughter has undergone, Robyn Aaron said Kaylee is blessed with a good attitude.
“She feels that God gave her this and she can handle it,” Robyn Aaron said.
Joe Napsha is a staff writer for Trib Total Media. He can be reached at firstname.lastname@example.org or 724-836-5252.
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