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Aaron's Story

October 23, 2018

Aaron's Story

Aaron and his family are long-time friends of Melissa and her family going back to when their oldest children were in elementary school together (they are now in college!). Many fun years were spent skiing together at the same mountain. Since Aaron’s diagnosis, Melissa witnessed first hand how their entire family has been affected. The courage and grace they display in living with this disease everyday is amazing. Currently, there is no cure for Crohn’s or colitis and Aaron’s mom, Elizabeth, works tirelessly to raise awareness and money for The Crohn’s & Colitis Foundation.  We are humbled by their efforts and thrilled to be able to partner with Aaron and his family to raise awareness and money to help find a cure. 

Aaron’s Story

Fifteen-year-old Aaron Orgel isn’t letting inflammatory bowel disease slow him down or shake his positive spirit. This courageous teenager is speaking out to support the more than two million Americans who suffer from Crohn’s disease and ulcerative colitis.

When I was six years old I got sick.  My parents thought I had a stomach bug but it didn’t go away and I was increasingly sick.  A few weeks later, I was admitted to the hospital.  A colonoscopy revealed that I had ulcerative colitis (an incurable disease neither I nor my parents had ever heard of). That first year, as a first-grader, I missed more than half the school year. Those first few years, I missed tons of school, sporting events, parties, and vacations. We tried different diets, new medications, acupuncture and some alternative therapies. I had to endure incredibly painful shots, long infusions, and lots of pills every day.  Nothing seemed to work and it was really rough.  I was constantly in and out of the hospital, in and out of the bathroom, and I was constantly in pain.

Over nine years later, we now have found the right combination of treatments. For now, I’m in remission…hooray!  I’m finally growing and this past year, I did not miss too many days of school. I’m on my high school soccer, ski, and tennis teams, and I sing in an acapella group.

While my quality of life has improved drastically, I still live with the fact that there is no cure for the disease. I am all about keeping a positive attitude and doing what I can to help others which is why I have become seriously involved with the Crohn’s & Colitis Foundation. For the past nine years, I have participated in their annual fundraising walks as well as a lot of other events that the Foundation sponsors. In June, I was named an Honored Hero at the Boston Takes Step Walk. My goal is to inspire others to give and help fund research so that a cure can be found.

On a personal level, it’s been a powerful experience for me. At my high school, I’m the only kid I know of with this disease. Being part of the Foundation has enabled me to connect with others who understand the struggles I experience.

The past three summers, I attended Camp Oasis, a week long summer camp for kids with Crohn’s or colitis.  This camp is run by the Crohn’s & Colitis Foundation and it’s amazing. It’s staffed with doctors, nurses and counselors (most of the counselors have the disease). From an outsider’s perspective, it is just like any other sleep-away camp: tons of sports and fun activities. However, there is a comfort and an instant bond amongst the campers in just knowing that we all just “get it” with the pain and hardships of these diseases.

In school, my favorite subject is biology, particularly the study of human systems. In fact, my goal is to become a gastroenterologist so I can help adults and kids with diseases like mine.

In the meantime, I will continue to support the Crohn’s & Colitis Foundation. I’ll continue to share my story because I can be the voice for so many people who are uncomfortable sharing theirs. Diseases like Crohn’s & colitis will go unnoticed unless we speak up. I hope that someone like me, sharing my struggles with Crohn’s & colitis will inspire others, regardless of their age, to do the same. I believe that sharing my story will help create more awareness, raise more money for research, and ultimately lead to a cure.

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Learn more about The Crohn's & Colitis Foundation: http://www.crohnscolitisfoundation.org/

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