Long Island Take Steps for Crohn's & Colitis

Team Athena

I first got Crohn’s when I was 3.  I don't remember it at all. So I asked my mom and it turns out there is a lot I don't remember. She says it all started when I was just potty trained and she saw blood in the toilet. So she took me to the doctor and I had to have a colonoscopy. Even though I couldn't eat all day and I had to drink a terrible tasting liquid, my mom said I was a champ as long as I was watching Dora the Explorer on TV.  Anyway, after the colonoscopy they officially diagnosed me with Crohn’s disease. I started taking all different kinds of medications: at first, it was an orange colored liquid, then it was shiny little gels that she would mix with my food, then it was more pills and even medicine that wasn't taken by mouth.

By first grade, I really wasn't feeling well at all and I also wasn't growing at all. When I was 7 years old, I started putting a tube down my nose every night into my stomach so that I could get food into my body while I was sleeping. I learned how to put this tube in every night all by myself.  I also started giving myself an injection medicine every night to help me grow. I stopped the tube last year and instead I go to the hospital every month for infusion medicine. I usually read, do homework or watch TV while I am there. 

Now I am in 6th grade and most days I feel pretty good. I still have to go for colonoscopies, MRI's, infusions and doctor’s appointments but that's what keeps me healthy. I like telling my story because I hope that it might help others feel like they are not alone. One of my favorite days is the CCFA Take Steps Walk. I go every year with my entire family. It's great to see so many people there supporting each other.  I hope you come and walk with me this year and help me make this the best Take Steps Walk ever!

Please join our team or donate to our efforts to support CCFA in finding cures!

Please mail all offline donations (checks) to:

CCFA Long Island Chapter - Take Steps 
Attention: Team Athena
585 Stewart Avenue, Ste 304
Garden City, NY 11530
*Checks should be made payable to CCFA

 

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