I'm not very good at asking for help. So many people have said, "Let me know what I can do to help" but with FPIES, there hasn't really been a way for people to help us. Until now. So, here it is, my plea for help.
When Ginny was 6 months old and had her first FPIES reaction, we rushed to the ER of a major children's hospital in an absolute panic. We live in the third largest city in the United States. No one there knew about FPIES. Since then, we have seen loads of other doctors at that same hospital and many others searching for answers, searching for a diagnosis, searching for understanding to help our child. It has been a long road. At this time, little is understood about FPIES and, in turn, few doctors know about FPIES. I sincerely hope that this will soon change. We are incredibly lucky that Ginny has made so much progress and is tolerating so many different foods. Unfortunately, we know too many kids who rely on elemental formulas, nasal feeding tubes and G tubes for nutrition. We know too many moms whose hearts are breaking as they simply work to feed their children.
The Children's Hospital of Philadelphia (CHOP) is the leading center for FPIES research. When you go online, it's their articles you most often find. When FPIES kids get really ill, that's where their parents take them. This is THE place to find a team approach, with GIs, Allergists and Nutritionists working together; healing children suffering from multiple reactions, preparing plans for parents moving forward, researching to gain understanding of this nasty monster and spreading the word so that more doctors and parents recognize it and can do the same. What Wonder Woman (our Pediatrican) knows she learned from CHOP. What Boy Wonder (our Allergist) knows, he learned from CHOP. What many of the FPIES moms know, they learned from CHOP (and each other of course!). I truly hope we never have to go there, but simply knowing it is there is like having an ace in the hole. Should Ginny ever get that bad... there's always CHOP.
Recently, an FPIES mom we have come to 'know' (via our invaluable/absolutely essential online FPIES community) has paired up with CHOP to create the FPIES United Family Fund. It is the goal of the fund to raise $300,000 to be used for the following:
- Research including a sample of 500 FPIES patients
- Education for medical professionals
- The establishment of an ICD (International Statistical Classifications of Diseases) code for FPIES (which could lead to both better awareness and treatment)
- Grant writing for funds to further this research
We appreciate the love and support we have received from family, friends and the FPIES community - and we thank you on behalf of Ginny, and all the FPIES kiddos for any contribution you're able to make.