This week, the International FPIES Association announced a new study to investigate the intestinal microbiome of the infants with FPIES, led by Principal Investigator and I-FPIES Medical Advisory Chair Anna Nowak-Węgrzyn, MD, PhD. The findings may result in the development of a novel approach to treat FPIES and potentially prevent FPIES in infants at risk.
This groundbreaking new research is funded in part by a generous gift from the Baker family We asked the Bakers to share their FPIES story and why they are passionate about helping to advance FPIES research:
Tell us about your family’s experience with food protein-induced enterocolitis syndrome (FPIES).
Our son was born promptly on his due date, and after a few months we began getting excited to start solid foods with our little guy. Watching his reaction to new foods with all of those cute facial expressions was the best. For his first solid we sampled homemade rice cereal when he reached 5½ months. He seemed to love it, and what joy it was seeing his excitement bite after bite! A week or two later he tried sweet potatoes. Again, those facial expressions and the hype of a new food provided so much joy!
After a short break, we went back to rice cereal, and he continued to love it! After rice cereal that day we left the house to run some errands, and while out and about our son became extremely ill in his car seat. He continuously projectile vomited all over himself, his car seat, and the car. We pulled the car over and pulled him out of his car seat where he continued to vomit, became pale and lethargic and eventually unresponsive. After a quick 911 call and the support of EMTs, we ended up getting him to the hospital where he was diagnosed with a “bug.” A few hours later he was back to his normal self. We didn’t feel right about the diagnosis but chalked it up to being new parents and thought to ourselves maybe kiddos do get this sick when they have a “bug.”
We decided to take a break from new foods for a few days to let him recover. A week later, we started solids again by giving him avocado, which he had had before with no issues. Three hours later, we were in the midst of another acute vomiting reaction. We immediately knew this reaction was related to food.
That was the beginning of our medical journey and the end of the excitement about feeding our son solids. During the avocado reaction, an ER doctor mentioned a syndrome he recently read about, but had limited knowledge of, called “FPIES” and suggested we connect with our pediatrician. Our pediatrician referred us to an allergist, and we experienced two more acute reactions to two other foods (sweet potatoes and dairy) within four weeks. It was the scariest, loneliest, and most worrisome four weeks we had had with our little dude. We felt as if we were on an island, alone.
How did you come to get involved with the International FPIES Association (I-FPIES)?
We had difficulty finding a provider who was competent in helping us navigate this thing called “FPIES.” That’s when we found the International FPIES Association. Within one month of diagnosis, we were on our way to the organization’s 2018 FPIES Education Conference in Philadelphia where we gained a ton of knowledge, learned about current research, met numerous families who were experiencing similar struggles, and were able meet with experts in the field. We also connected with Fallon Schultz Matney (the Founder and President of I-FPIES) and asked about research. Soon after leaving the conference, we reached out to Fallon for direction on finding a team to treat our son in our area. She set us up with our current allergist, who has helped guide us through our journey thus far.
Why are you passionate about supporting this research project on the microbiome in FPIES?
We discovered that funding for FPIES research was challenging because most of the money comes from families, however these donors are often temporary because many kids with FPIES outgrow their allergies. Further, given the newness of the syndrome, awareness in both the general public and even the medical community is limited. The research to date indicates that FPIES is increasingly common in both children and adults, meaning the number of families impacted by FPIES could be far greater than previously assumed. We want to help answer the very basic questions of “why” and “what” to help advance the disease.
Is there a message you’d like to share with other families who are on this FPIES journey?
We would love to pass along to the FPIES community the importance of sharing your knowledge and story with the community. We also feel that every dollar helps in furthering research in FPIES and to never give up hope. We are incredibly fortunate to have a healthy son living with FPIES who has over 30 safe foods as of today. He is thriving and happy. However, we are very aware there are other kiddos who are struggling to thrive and have lived with FPIES for far too long. We feel that helping to support research with the hope of someday finding answers is key to both the health and quality of life for patients and families living with FPIES.
Thanks to the Baker family for sharing their story and making an impact in the fight against FPIES!
Are you ready to help advance FPIES research? There are many ways to contribute to our mission: hold a fundraiser in your area, volunteer your time and talents, or make a generous gift of any size.
Getting involved is an empowering feeling! Get in touch with us at firstname.lastname@example.org to learn more. With your help, I-FPIES will continue to make great things happen in our FPIES community!