A Henrietta teenager and her mom are raising money and awareness about a disease that caught their family off-guard.
Crohn’s Disease is an inflammatory bowel disease that impacts 1 in every 100 people. Clara Burley has lived with it since she was 7-years-old, but it hasn’t changed her much.
"She is a very bright, very compassionate, sweet, funny, and very talented young woman who has had a lot on her plate to have to deal with at a young age and come through," her mother Carol said.
The diagnosis took a toll on the family as Clara underwent treatment and the constant pain that comes with the disease.
"The pain never goes away even with medicines and treatment," Clara said. "There’s always pain, and I used to tell my mom that when I was really little ‘Yeah, I’m on all these medications, but that doesn’t mean there’s no pain.’”
Pain and issues Clara’s family never thought they would go through.
“I thought, 'Okay, she’s just going to take some pills and once we get on those pills you know in a couple of days we’ll see some improvement and everything will continue on and we’ll just fill prescriptions.' But that didn’t happen,” Carol said.
Clara would physically look okay, but inside she felt bad.
"It’s actually something they call an invisible illness, which means they act like they’re completely normal child which I am, but I have like this little quirk to me that’s Crohn’s Disease,” she added.
Since finding out the about the diagnosis, the 15-year-old has gained a positive mindset from the daily struggles.
"I don’t want people to take away that I’m a sick kid," Clara said.
"I don’t want kids to take away that she’s been through so much," her mother added. "I want them to take away that she has a good outlook, even though she’s been through a lot.”
That positive mindset is pushing her to help others.
Clara and her mom have raised $30,000 from hosting annual Bar-B-Q and garage sales to benefit the Crohn’s and Colitis Foundation.
"We’re going to use this for research, and we’re going to find new medicines [that] at some point I hope becomes a cure," Carol said. "But, even if we don’t have a cure, we have to have more medicine that keeps coming because it’s a progressive disease, so what works today may not work tomorrow.”
Living life just like any teenager, the 15-year-old said the experience has opened her perspective on life.
"Because I have dealt with this since a young age and I’m kind of good with it. I can spread the word for other people who don’t say anything about this and that means a lot to me because I know that I’m helping someone else," Clara said.
The Crohn’s and Colitis Foundation is hosting it’s “Take Steps Walk” Saturday, September 14 at Ontario Beach Park. Check-in is at 10 a.m and the walk starts at 11:30 a.m.
The foundation says it hopes to raise $60,000 this year from the walk.