Founding Walk in Michigan - 6th Annual Walk for FPIES - Walk for Weah
In 2015, after struggling in the throes of the living hell of life with FPIES, I woke up one morning called to make a change.
I reflected on how our family and friends poured their love, time, hearts, tears and even monetary support into us and I had to give back. I looked around and there was no support group for FPIES in Michigan so I started one. There was no charity event for FPIES in Michigan so I started one.
In 2015, I contacted my family and friends and said I want to start a walk. A walk for Annaleah (aka Weah) benefiting a charity. I asked Annaleah’s allergist for a recommendation on which charity to benefit. He said International FPIES Association (I-FPIES). He said they are the leading medical authority on FPIES. With blind faith, a white t-shirt I made on vista print, my family, friends and two local FPIES families met at a park and we walked for Weah and all the FPIES children.
As the years pass, more and more families suffer from the FPIES diagnosis and more and more families put on that white t-shirt, meet us at the park and we walk together every summer.
Together, we have raised over $15,000 for I-FPIES.
Why I-FPIES? After the first walk, I started volunteering for I-FPIES. I have attended the Education Conferences, I have been in the room with the team members and felt the passion and dedication of the volunteers and of the medical advisory board. I have seen the significant accomplishments and the force of progress I-FPIES has driven: the online resources, the first diagnosis code, the published FPIES guidelines, the Congress enacted National FPIES day on May 4, the countless support calls personally handled by I-FPIES and the ongoing research projects. I have seen the organization’s positive impact to the lives of FPIES families and my blind faith turned to deep rooted faith.
Here is a little about my family's personal story...
We knew something was "wrong" with our daughter, Annaleah, 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! Fast forward to today, she is 6 years old, eating freely after being declared FPIES free at age 5!
Maine 1st Walk for FPIES
It all started right out of the gates, I knew something wasn’t right. As a baby, he would constantly scream, have diarrhea, vomit, arch his back, and his belly would get so hard. He wasn’t nursing how he should be and I wasn’t new to nursing. I nursed my oldest child for 8 months.
In 2016, at his one month old check up, we discussed switching him to formula. We tried 3 different formulas and no change. He was always screaming in pain, had constant diarrhea and a rock hard belly. It got to the point it was so bad that he just stopped eating. Garrett was losing weight rapidly. It was alarming. I was told it was just acid reflux and that in time things will start to turn around. We started on reflux meds and it didn’t make a difference.
Later, we were told to start adding oatmeal to his diet in the hopes he would gain weight. We did and at that point I knew it wasn’t just acid reflux, it was something else.
With oatmeal, Garrett would throw up every time after eating it and it wasn’t just a little vomit, it was a lot and everywhere. He would turn so pale and become weak. We tried other foods like apples and pears and those would make him scream more and break out with a rash on his face. Chicken would cause him to have bloody stool and his bottom so red and to blister so bad that he needed prescription medicine. By this time, we were all at a loss. We had switched formulas, tried various reflux meds and Garrett was not doing well and all we were doing wasn't working.
In March 2017, we got sent to a GI Doctor and she was determined to give us answers but that wasn’t without needing multiple tests and procedures, including endoscopies and colonoscopy. On August 11, 2017, at 16 months old I heard the words for the first time...“I think your son might have FPIES.” She referred us to an allergist. On September 6, 2017, at almost 17 months old, we got the diagnosis of FPIES to Oats and Chicken with possible Apples and Pear as well. We were told to avoid these foods and we would retest him in a year.
It sounds easy to have a treatment plan and just avoid these foods, but the journey it took to get there - the doctor appointments, the sleepless nights, the agony, the multiple trips to the walk-in care, and numerous Er visits, including one that put us impatient.
It was January 26, 2019 and our family’s world was turned upside down. It was the day that put a fire in me. It was the day that I told myself that people will know about FPIES and that it will become my mission. This day was when Garrett officially became one of the 20% of children that goes into shock due to FPIES.
I think it is difficult for people not living with FPIES to understand how life changing it is. People don’t know what it is and haven’t even heard of it. Our family misses out on so much to ensure we keep Garrett safe from food reactions. We can’t just go out to dinner. We can’t just go to a BBQ, a wedding or really anywhere outside of home without worrying. Considering to stay away from home is a whole other level that we can't even get comfortable with. When we are able to attend something, we need to think and about plan out everything, including what will be there to eat, who will be there, can we bring our own food, will we be socially accepted, etc... We want to be loved, understood and respected and to have everyone around us focus on what's best for Garrett and how best to keep him safe.
Garrett is 4 years old. His reactions to oats, chicken and pears remain unchanged. Trying new foods is a challenge for him. He is extremely fearful of new foods. His anxiety is always on high alert and no 4 year old should feel they way he does. As I share our story, my hope is that you will take away that living and navigating this unknown world of FPIES is hard and so challenging. That the only way to know more about FPIES is to talk about it and and spread the word!
I am his voice, his advocate and people need to know about FPIES.
Thank you for reading our story.
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 diarrheaIn 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.
For more information on I-FPIES and FPIES, please visit www.fpies.org.