Featured Gut - August 2010
AMANDA CICERO - Stoney Creek, ON
My name is Amanda Cicero, and I am entering Grade 11 at Cardinal Newman Catholic Secondary School in Stoney Creek, Ontario. To many people who do not know me, I look like an average teenage girl, just shorter and very petite. I love to sing and have a passion for art. But for those of you, who do know me, know that I suffer from Crohn’s disease.
I was 8 years old when I started to become ill. I would have stomach aches that gradually got worse over time. I felt sick and my stomach became very tender. I had little or no desire to eat and lost quite a bit of weight. When I was 10, I missed a lot of school because I was so sick. I felt cold all of the time. I had fevers for no reason and my skin was grey looking. My hair was falling out and I lost all of my eyelashes.
What was happening to me? It would be almost two years later before I would find out what was wrong with me. After months and months of very unpleasant tests and many trips to the hospital, the wait was finally over.
On January 8, 2007 my diagnosis was confirmed. I had Crohn’s disease. I felt better knowing what I had, so I could get the treatment that I needed, but at the same time I felt horrible because I thought “ok, am I going to have to live with this for the rest of my life?” There is always this uncertainty, so all you can do is go one day at a time.
I have been hospitalized three times now due to the disease. The first time, was in September 2008, where I was put into isolation at McMaster Hospital. I had a feeding tube inserted as my only source of nutrition for eight weeks and a steroid called prednisone to help with the inflammation. Things seemed to be going well and then I found myself back in the hospital in October of 2009 with the same complications. Once again the feeding tube was put in to help.
We applied for funding to help with a drug called “Remicade”, but that took too long so I participated in a study for a new drug called “Certolimzab.” By February of this year, I was not responding well, so along with my doctor and my mom, we decided to try for Remicade again. Unfortunately, on Father’s Day, June 20th, I was admitted back to McMaster Hospital, this time with Toxic Mega Colin. It was very scary. The feeding tube is back in and I am again on prednisone. I came home on June 28th, only to go back in again on July 13th. I am on the road to remission, but you all know too well just how long a road that is. I am determined not to let this disease dictate my life.
I love to sing and it is a way for me to take my mind off of everything. I have competed in the Hamilton Teen Idol three years and row and have made the top 20 every year. I hold the title of Stoney Creek Idol for 2009. I am also an active member of the Hamilton Area Chapter of the CCFC where I help organize events and fundraisers. I have been interviewed by our local newspaper and the community television station to help raise awareness for Crohn’s disease.
This past April, I spoke at my old elementary school and helped organize a fundraiser where the staff and students raised $475.00 for me for the Heel ‘n’ Wheel-a-thon. I have been a top pledge earner for the past two years as well, which means I raised over $1000 each year.
My Mom and I have also started a fundraiser called “Amanda’s Angels” from which 50% of the profits go to our chapter. You can find “Amanda’s Angels” at local events. Finally, I am working towards graduating with a major in art and furthering my education as either a graphic designer or web designer.
Crohn’s disease interferes with your life daily; it means having good days and bad days, both physically and emotionally. It’s kind of like a roller coaster. The key is to keep moving forward, no matter how hard it may seem.