Marathon #14 – 26.2 for Addy
My name is Addy and my journey started almost five years ago in October of 2013. That fall, my mom (Nicole) knew something was wrong with me. She tells me that my bright blue eyes turned grey, my hair became stringy and brittle, my face became sunken, I was becoming skeletal with all the weight loss, and the color of my skin changed to a very sickly one. I knew I didn’t feel well, but I didn’t know what was going on. As I got sicker and continued to lose weight, my mom took me to the doctor over and over. At first they thought I had cancer and a bunch of other things. Once they decided I didn’t have anything they told my mom it was all in her head and nothing was wrong with me. My mom fought the doctors for months because no one believed her.
Four months later, I was so sick and started bleeding so much that my mom took me to the ER and refused to leave. Luckily, this time, someone listened and they admitted me. There were days in the hospital where my mom held my limp body crying. There were days I couldn’t even wake up. After 8 days in the hospital, I received the Crohn’s diagnosis. I left the hospital with a feeding tube and 15 weeks of formula only. I was sad and depressed.
Addy was put on treatment using a combination of Exclusive Enteral nutrition (EEN) and the Specific Carbohydrate Diet (SCD) which can help children feel better and reduce inflammation without medication or steroids. Medicine isn’t always the answer for IBD, diet can also play a big role. After 15 weeks of treatment using EEN, a diet that consisted of only formula, Addy transitioned to SCD with the help of her team at Seattle Children’s Hospital. Although hard at first, Addy responded to this treatment which helped her achieve clinical remission for well over two years. However, as well as this diet worked, it is still not a cure.
This past year I was one week away from 3 years in remission and ended up in a really bad flare. My disease became life-threatening very rapidly, this time with a Toxic Megacolon, and I was moments away from surgery to remove it. But, today, I fight. I am doing much better but still have a long road to recovery. I am turning 13 on Sunday and all I want for my birthday is a cure so that I can just be a kid
Running 26.2 for Addy!
Marathon 14 – Recap