My seventeen-year-old son, Jacob Ryan Tolle, has Eosinophilic Colitis and Eosinophilic Gastroenteritis.
Throughout his life, Jacob had stomach problems. It wasn’t until his family doctor decided to send him to Children’s Mercy in Kansas City that we found out why he was having all these stomach issues. When we first heard the news, it was difficult enough just to say “eosinophilic”–trying to make sense of it was impossible. We’re doing out best to learn all we can about this disease.
It’s now February 2015 and we know more than ever. Jacob turned out to have allergies to chicken, pork, dairy and oats. To help prevent anaphylactic shock, we carry around an Epi Pen, a drastic measure that will help to open his airways in the case that he has a reaction after eating something
He has been on medications, but none seem to be working well enough right now so next week Jacob will start on the lementa diet–a diet which means no solid food, just a special formula drink.
Jacob is so brave and makes me a stronger person every day. I love him for who he is and the courage he shows in the face of his disease each day. So far there is no cure for this disease, though we remain hopeful for the future.
March is the Month to Share YOUR Story!
Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.