What if your child could only get their nutrition from a feeding tube or by drinking a prescription formula? This is a very thought-provoking question. You probably have never been asked this question before, but I’m asking you since this week is National Eosinophilic Awareness Week.
After years of going to several different doctors, L was finally diagnosed early last year with a rare disease called Eosinophilic Esophagitis. According to the American Academy of Allergy Asthma & Immunology, Eosinophilic Esophagitis is a recognized chronic allergic/immune condition. A person with EoE will have inflammation of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. EoE is considered to be a chronic condition and is not outgrown. That’s why why we need a cure for our L and the many others that suffer from this horrific disease. Children often have recurring abdominal pain, trouble swallowing or vomiting. The esophagus can narrow to the point that food gets stuck. This is called food impaction and it is a medical emergency. We have been in the emergency room several times with L because of food impactions before we took food completely out of her diet and put her on a prescription formula.
L does food trials and currently only has two safe foods, pears and sweet potatoes. Can you imagine waking up in the morning and only being able to eat the two same foods and formula? Can you imagine going to a party and watching everyone at food around you? Can you imagine walking into a restaurant and seeing all these people eat around you but you know that you are not able to eat that food? Can you imagine kids all around eating candy, ice cream cones, and/or juice but you can’t? It’s hard to imagine life like this but it is our L’s reality. We need a cure.
The CURED Foundation is a not for profit foundation dedicated to those suffering from Eosinophilic Gastrointestinal Diseases (EGID), including eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic colitis (EC) and other eosinophilic disorders. CURED is committed to raising substantial funding to aid in research, advocating on behalf of EGID patients and their families, and working to educate and increase awareness about this complex group of diseases. 100% of every donation to the CURED Foundation goes straight to research. Will you help spread the word and/or donate so we can see a CURE in our near future. Our family is begging and pleading for you to take this serious.
Thank you for hearing us out. My L is the strongest person I have ever met. She truly is my hero!
If I’m not mistaken, I’ve known one other child with this disorder. I’d never heard of it before, but I’m pretty sure it was the same thing. I remember the mom calling it EE for short. Needless to say, it is hard on the whole family. How wonderful it would be if a cure was found! I’ll bookmark the Cured Foundation page so I can remember to give when my budget flips to the next month. Praying for you guys!