Meet our Local Hero, Colin

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Hi! My name is Colin and I am 2 years old. I am a very busy boy! I love people and helicopters and Curious George. My favorite toy right now is a doctor kit I got for my second birthday. I have fun wearing the stethoscope and giving my stuffed animals their medicine. It’s probably my favorite because I have to go to the doctor a lot and take medicine every day so I don’t get sick again.

 When I was just 10 months old, I spent over 30 days in the hospital including my very first Christmas.  It all started right after Thanksgiving when my parents found blood in my stool. It really scared my Mom and Dad. They took me to urgent care then the pediatrician then to the ER twice over several weeks until we finally saw a pediatric gastroenterologist and I was admitted to Children’s Mercy. The doctors kept telling my parents it was a milk protein allergy but my parents were skeptical. I have an Uncle and Aunt on each side of the family with the disease. My Uncle Chris was diagnosed with Ulcerative Colitis when he was 16.  It was later determined to be Crohn’s Disease. Just recently his j-pouch was removed and he was given a permanent ileostomy. He is only 32 years old and it was his 4th major surgery in 12 months. He is very brave. I hope he feels better soon. Also, my Aunt Laurie was diagnosed with Ulcerative Colitis several years ago.

 I had an NG tube and a PIK line for food. I had to stop nursing and eating regular food. I had a colonoscopy and even had to get a blood transfusion. When other treatments for the milk didn’t work, the doctors said they thought I had very early onset inflammatory bowel disease (what they call IBD when you are under 2 years old). The day after Christmas, I flew on the Children’s Mercy jet to Boston Children’s Hospital. I was there for about 10 days where they confirmed my diagnosis with a second colonoscopy and started weaning me off the high levels of steroids to find a maintenance medication that would work. Then we flew back home to Kansas City.

 I take medicine twice a day and have been very lucky to not have another flare so far.  I have regular check-ups with my GI doctor and my mom tries to help me watch what I eat.  Otherwise, I don’t let my disease hold me back!

 Thank you for allowing me to be your Honored Hero for Kansas City CCFA Take Steps Walk 2017. I hope we raise a lot of money to help people like me with IBD! 

 


 

Take Steps Honored Heroes represent the Crohn's disease & ulcerative colitis warriors living in our community. They share their story of life with IBD to raise awareness and inspire others to join the fight against digestive diseases.

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