This morning, along with 7 other dedicated moms, I am proud to announce the launch of The FPIES Foundation.
When your child is diagnosed with FPIES, doctors don't have a packet of information to give you or a website to direct you to. It is difficult to find another family to turn to for support and advice. An FPIES diagnosis is isolating and scary, in large part due to the simple lack of information available about it. We hope to change this. We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources. We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.
I am so proud of what we have accomplished. I am so proud that it aches in my chest... and this is just the beginning. There is so much in the works, so much more to come! It feels WONDERFUL to be doing something so proactive - especially as FPIES is such a reactive condition (feed something to your kid and wait to see what happens). We did this for Genevieve - and for Brendan, Sam, Samaya, Carter, Kara, Bridget and Ellie... and we did this for YOUR FPIES kiddo too. You are not alone!
We named her Genevieve. We call her Ginny, G, Little G... and sometimes even Goob. She has FPIES - Food Protein Induced Entercolitis Syndrome. The road to a diagnosis was tough, and we have an even longer road ahead of us as we figure out just what we can safely feed her, and work to keep her growing healthy and strong. I'm blogging to keep family and friends up to date as we learn more everyday - and just maybe our story will help other parents as they journey and struggle with FPIES too.
That is awesome!!!
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