The FPIES Foundation SAVED us! This was literally the only place we got answers, advice, encouragement, and HOPE! Thank you FPIES Foundation for helping our family thrive!
When I was at a complete loss because my daughter was so ill and nothing made sense and the doctors were baffled, The FPIES Foundation was there. Suddenly, everything clicked and I had a direction; a way to protect my daughter. I sobbed. Agonizing sobs that IT had a name, a treatment plan, and others who had been there. And knew how to navigate Healthcare. I finally had an ally.
My son, Luke, experienced severe acute to shock FPIES reactions to dairy at 3 and 4 months old, and required hospitalization. It was the most terrifying experience we’ve ever had. Even after this, he was not correctly diagnosed. I found his diagnosis by accident when he was about 6 months old. And thank goodness I did, because I found The FPIES Foundation and was able to learn everything I needed to know to keep him safe. We would not have introduced foods in a way that would have been safe if it hadn’t been for the education of this group. We live in the biggest city in Montana, but we don’t have access to highly specialized care. Luke turned 3 years old last month and we completed the dairy ladder with no reaction! It’s unbelievable and wonderful and we are so relieved. I’m so grateful to The FPIES Foundation for helping me learn how to keep him safe and helping me understand this condition. I’ve learned so much more from this organization than from his doctors. We actually taught his doctors in the last 2.5 years!
My son was 3.5 before we got our official diagnosis. By that time he had already been to the ER in shock 7 times. We had been told for years that it was just a tummy bug it would go away soon. It never did and for 3 years he slowly slide down the growth charts. Finally I hit all wall I researched everything I could online and found Fpies foundation. Then an allergiest with experience treating Fpies and finally we got a diagnosis of 4 Fpies trigger foods. My son is finally on the road to healing and this foundation was the starting block.
My son was diagnosed with FPIES 3.5 years ago. While it was a life altering diagnosis from an allergist who knew little to nothing about FPIES, this organization helped me understand what the diagnosis was, how to handle daily life, and ultimately how to overcome my fear of it. I can safely say we are FPIES free but I couldn’t have survived without their help.
The FPIES Foundation gave me hope at such a difficult time in our lives. I searched everywhere for information and support but had no luck until I found the FPIES Foundation. This is the one place you can go to get accurate information and advice. My son’s allergist provided me with a letter printed from the FPIES Foundation website that I had to bring with us to the hospital if my son reacted and required care. The letter explains FPIES and how to treat it so that medical staff could respond properly. From the Foundation I was able to get advice about our son, as well as read about families who were going through a similar situation as we were. I was also able to find an online support group, which helped me tremendously.
Both my children have FLIES, they offer great tips and updates on new products that are allergy safe and help to promote awareness on this rare allergy!
The FPIES Foundation helped me to find the specialists my son needed.
If it were not for the FPIES Foundation and the information that I was able to find, I do not know if my son would still be here today. Doctors kept telling me that nothing was wrong with my son. I knew something was very wrong. I was able to find a doctor through the FPIES database who was knowledgeable about FPIES and diagnosed my son at a year old. As a result he was finally able to get the help that he needed.
Wonderful foundation that brings hope to those who are living the fpies life.
It all started when I googled "rice and oat baby projectile vomiting." I had no idea what I would find when I typed in those words. No idea what I was dealing with. Ya know who else did not know-the pediatrician.
The top result returned was The FPIES Foundation page. I devoured their website in just a few hours. I returned to my pediatrician's office armed with print offs and requests for referrals. The FPIES foundation gave me the knowledge I needed to k ow what craziness my baby was dealing with and opened the doors to an incredible community.
They have the best information and helpful with where and how to go about slog question
The FPIES Foundation is amazing and have brought so much more light to an issue I knew very little about
My granddaughter had Fpies and the foundation lititure was a real help and comfort to us
This non profit has changed my son and our families life forever. I cannot thank them enough for all of the research and awareness they do for families like ours. #FPIES
The community they have created has been an amazing and supportive resource.
The FPIES foundation has been a blessing to me. I have enjoyed learning from this foundation about healthier options for my baby's unhappy tummy.
Great niece has FPIES.... Organization has helped the family learn to cope and survive in everyday life. Great support system
The FPIES foundation has continued to rise to the challenge of spreading awareness and helping provide resources to families dealing with FPIES. We have relied on the material they produce and provide free to everyone to help educate family, doctors and schools on how to handle our daughter's condition. Without their support, so many families would be lost!
As a parent of a child with FPIES, the FPIES Foundation has been an invaluable resource for our family and others struggling with this confusing and difficult diagnosis. With such a rare condition, many families are left to find information on their own as they try to understand how to manage this form of allergy. The FPIES Foundation has brought together a wonderful combination of support from others going through the same struggles, as well as expertise from the medical field to provide insight as the knowledge and information grows on how to diagnose and treat children with FPIES. They have put together so many resources to help families in one central place. This foundation has also been so instrumental in furthering research on FPIES and spreading awareness to the medical field and the general public. The sooner a child can be diagnosed, the sooner their families can start on the path to healing and finding safe food choices. We are so thankful for the FPIES Foundation and all of their hard work to provide all of the support that they do!
Fantastic Organization. Helping families with FPIES and beyond!
I first discovered The FPIES Foundation through a google search of my sons symptoms. He was 2 years old, failing to thrive, and was constantly in the hospital and doctors offices. He was very sick, and no one could figure out why. Once I found the Foundations website, and learned about FPIES, I was able to help the doctors find the resources that they needed to learn about FPIES, and help my son. Our journey with FPIES has been long, but I am so grateful for the Foundation every step of the way. In April, my son got very ill from a reaction to his only safe food, a formula, and was hospitalized most of the month. Our doctors were able to connect to The FPIES Foundations Medical Advisory Board, and talk to the front runners in FPIES knowledge and research, so that they would best know how to help my son. I will forever grateful to The FPIES Foundation. All of their hard work in research, education, support, and outreach literally saved my sons life. The support system they have created in this world of rare disease is unprecedented, and makes me feel like I am not fighting a losing battle anymore. The board of directors are amazing, and never stop advocating for FPIES, and helping parents learn how to effectively advocate for their children so that they can receive the help and proper care that they need. Through their tireless efforts, I feel confident that FPIES will be better understood, and better known in the medical community and beyond, and that other children will be able to receive proper medical care down the road, and not have to go through what my son had to go through to receive his diagnosis.
The FPIES Foundation was life changing for my family. My husband and I were desperately searching for answers as to what was causing acute to shock reactions in our less than 6 month old baby girl. The moment I read and FPIES on the FPIES Foundation site was the moment we started heading in the right direction to truly change my child's life. I don't know where we would be without them. Certainly far from the healthy 22 month old we have today. We owe everything to the FPIES foundation.
The FPIES Foundation has given me the tools to educate my community. They have given me educational material for my local EMS fire station, emergency room, and coworkers. The more people in the community that are aware the better. At 7 months old my son was rushed to the ER for an fpies reaction and it took 7 months to get a diagnosis. Through the work of the FPIES Foundation I look forward to the day the diagnosis will come sooner for other children.