2021 Southeast Michigan Honored Heroes

 
 
Melanie Roma
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I was diagnosed with Crohn’s disease in 2004. I was six years old at the time but showing symptoms for over a year. To be quite honest, it is hard for me to recall what life was like back then. What I do remember are countless blood draws, infusions, medications, procedures, and hospitalizations. It was an endless cycle of doctor's appointments, missing school, and being unable to participate in many of life’s events from being too sick to attend. I felt extremely alone.

Many of the initial therapies I tried would alleviate symptoms only for a short period before it stopped working altogether. This often left me deflated and disappointed. Luckily, my doctor at Beaumont was connected with Camp Oasis and recommended that I apply. It took me a while to warm up to the environment and there were even a few summers that I couldn’t attend because I was too sick. As I felt healthier and became more acclimated to Camp, I was able to see that I wasn’t alone anymore. Kids that I spent one week of my summer with are still some of my best friends to this day. Camp Oasis changed my life for the better. I don’t know where I would be in life without that experience or the people I met along the way.
My journey with Crohn’s quickly became complicated. Running out of many treatment options by age 10, I was started on TPN, otherwise known as tube feeding. Even though I was extremely sick while on TPN, I was committed to maintaining the things that made me happy, such as playing sports. Unfortunately, the tube feeding did not alleviate symptoms for long and the next step was to schedule surgery. From the time of the decision to proceed with surgery and the actual surgery, my condition had worsened, and I ended up needing a permanent ileostomy.
Learning how to live with an ostomy was extremely challenging. Less than a month after surgery, I returned to school. I was devastated when I couldn’t resume normal physical activities yet, including trying out for sports. It was a huge adjustment learning to live with the new normal of having an ostomy. My bag is constantly on my mind, even to this day. Eventually I was able to play tennis, volleyball, softball, and perform in musicals again. Surgery truly gave me my life back.
Despite my many challenges, I was still able to go on spring break with my family, go to prom with my best friend, perform a lead role in the spring musical and spearhead the makeup crew, win 2 state championship titles for tennis, and graduate high school. Despite having a tough senior year, I went on to start college in Greencastle Indiana and enjoy experiences in Italy and South Africa. Although I had encountered many difficult situations at college and had to fight for appropriate accommodations for my disease, I ultimately learned how to be my own best advocate.
The past 16 years have been a whirlwind. There are so many reasons why it is important to speak up and advocate for Crohn’s and colitis, but one of the biggest reasons is the fact that this is an invisible illness. When people look at me, they can’t see my physical and emotional scars. Even the people who know I have Crohn’s disease have no idea what I go through on a day-to-day basis. It can be difficult to be vulnerable and share the parts of your life that aren’t so glamorous, but I hope that by sharing some of my own experiences I can encourage others to share their stories as well.

 

Ethan Stiller

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Hi, my name is Ethan Stiller and I live in Howell, MI. I am very excited to have been chosen as the Pediatric Honored Hero, thank you for letting me share my story. When I was 9 years old I was diagnosed with Crohn’s disease. I had been having a lot of stomach aches, fevers, did not want to eat, was losing weight, and missing a lot of school. My parents took me to the ER several times, all of which ended in a ruled-out misdiagnosis and then sent home. Shortly after this back-and-forth game, I ended up staying for a week at Mott Children’s Hospital in Ann Arbor and finally received the official diagnosis of Crohn’s Disease after my first colonoscopy and MRI. This was very scary for both my parents and me, but we had a wonderful team of doctors that walked us through everything. We decided on a treatment plan best for me and I received my first treatment before leaving the hospital. Since then, I have been very fortunate that I have not experienced any flare-ups. Outside of a special bathroom pass at school and learning to understand how some foods make me feel, Crohn’s has just become a part of who I am.  I am about to start my third season with the Howell Archery Team. I enjoy camping with my family and riding my 4-wheeler.

While I was in the hospital, we received a lot of information about Crohn’s Disease and it was recommended that we look at the Crohn’s and Colitis Foundation website. While researching my diagnosis my parents learned about Camp Oasis. Having never faced anything like this before, my parents thought it would be a great experience for me to meet other kids who live with the same or similar disease. Since this was my first time staying away from home, I was very nervous, but camp was so much fun that when my parents came to pick me up at the end of the week I did not want to leave! At camp we played games, went swimming, had parties, and I met a bunch of kids who understood what it feels like to live with Crohn’s. I cannot wait to go back.

Along with Camp Oasis, my family participates in Take Steps with my team, Ethan’s Avengers. The foundation had fun games set up and it was cool to see so many people participate in a walk for something we had never heard about prior to my diagnosis.

Having Crohn’s is not something I am ashamed of; in fact, it is one of the first things I tell people when introducing myself. It is something that makes me who I am.

 

 

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