Four years ago, I woke up one morning with a vision to give back to the community and support FPIES. That summer I created the "Walk for Weah" (Annaleah's nickname) and it was a huge success! Through our outreach the walk has evolved into the annual FPIES Walk - with a tribute to Weah and all the FPIES kids. We have met more and more families who are in the deep throes of their struggles, anguish, pain, failed food trials, malnutrition and significant eating aversions. Each of the FPIES kids have their own journey of illness. These families have become some of our most treasured friends and a lifeline for support. The annual FPIES walk is a time we can all join together for some fun and raise money for much needed research. Here is a little about my family's personal story... We knew something was "wrong" with our daughter, Anna, within the first 24 hours of birth. It took 9 very difficult months to get her diagnosis with food protein enterocolitis syndrome (FPIES). She experienced continual vomiting, diarrhea, paleness and screaming in horrible pain the first 1 year of her life. She could only drink about 2 oz. of milk so she fed continually every 2-4 hours 24/7 for the first 1 1/2 of her life. We had multiple hospital trips, specialist Dr. appts, enormous medical bills and countless nights with no sleep and an inconsolable baby. Her reactions became more distinct with solid foods. Rice, green beans and bananas sent her to the ER or with an ambulance being called. She was too sick to leave the house or to go to daycare. Even with my elimination diet of only eating 10 foods for months, she still reacted while nursing. I was devastated but at 7 months old, we transitioned her from breast milk to an amino acid based formula called Elecare. Elecare is how she has lived and thrived to be the sweet and beautiful girl she is today. Anna quickly learned the correlation between being very ill and food. She developed severe food aversions. She started feeding therapy at 7 months old and after a year, she only had two safes, Elecare and applesauce, and still would not swallow food or accept Elecare outside of a bottle. In October 2015, she was admitted to the Helen DeVos Intensive Feeding Program in Grand Rapids, MI. She and my husband (her dad) lived in Grand Rapids for 2 months for her to receive treatment. I stayed home with our other daughter who was 3 at the time). The program was so stressful and grueling for all of us and it was a huge success! She was discharged she was swallowing food, learning to chew and could drink her Elecare from a straw. It was amazing! Today, she is chewing and swallowing food and expanding her list of safe foods. I say all this to say that through our immense struggle, we had an outpouring of help, support and love from our family and friends. I woke up one morning and knew I had to give back to the community. That is when I created the "Walk for Weah." Below is a little more about I-FPIES and FPIES... The International FPIES Association (I-FPIES) is a recognized 501(c)3 nonprofit corporation and organization that provides education, support, and advocacy for individuals with Food Protein-Induced Enterocolitis Syndrome (FPIES) and their families I-FPIES was recommended to me by our allergist at U of M. So, I knew it was I-FPIES that I must help. With my own hand, I created an annual summer fundraising walk. I know now I-FPIES and its President and VP personally. I have been in the room with the medical advisory board and listened to them educate. I-FPIES is changing the FPIES world! It has successfully secured the first ever ICD-10 code so that doctors and hospitals can use this diagnostic code when seeing FPIES patients. I-FPIES and the medical advisory team have also created the first ever FPIES Guidelines that will be distributed to doctors and hospitals in 2017. I-FPIES and the medical advisory team have some large and critically important projects in the works and we are desperate for funding. It is because of the hope and promise of research and the future for FPIES patients that I continue to spread the awareness. What is Food Protein Induced Enterocolitis Syndrome? Food Protein Induced Enterocolitis Syndrome (FPIES) is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life. Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food. Diagnosis Unlike common food allergies, standard skin testing and blood testing for specific IgE are routinely negative in these patients. Therefore, a careful history and physical examination is the key for diagnosis. During an acute episode, laboratory findings can include an elevated white blood count with increased neutrophils and eosinophils, elevated platelet count, anemia (low red blood cell count) or low albumin may occur, particularly in chronic cases. In acute severe episodes, patients can develop methemoglobinemia. Natural History FPIES typically presents before 6 months of age in formula-fed infants with repetitive emesis, diarrhea, dehydration, and lethargy 1 to 5 hours after ingesting the offending food. The most common offending food is cow's milk followed by soy, and rice. Other foods have been reported including oats, barley, chicken, turkey, egg white, green pea, peanut, sweet potato, white potato, fruit protein, fish, and mollusks. But, FPIES is possible with any food. In 60-90% of affected children, FPIES is outgrown in the first 3 years of life. However, there are individual children that have FPIES continued into adulthood. Treatment For acute FPIES, treatment with intravenous hydration is often needed. There is no curative therapy at the current time. Strict avoidance of the offending food is the basic treatment. A hypoallergenic diet can be an amino acid elemental formula or an extensively hydrolyzed casein or whey formula. Thank you for reading our story and about our fundraiser. Please consider a donation! For more information on I-FPIES and FPIES, please visit www.fpies.org.