Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Tuesday, May 17, 2011
Front page news!
Our little man has what has been coined as "Atypical FPIES", this is due to his chronic ingestion of his main trigger. There is little research into chronic FPIES but a few articles are beginning to unravel it. His symptoms differ some from "classic" FPIES. Classic FPIES is where the research has been, the research has not caught up to where Little Man and so many other FPIES and Protein Intolerant children are. We have hope that by continuing to share our story, it will help to raise awareness to the dimensions within FPIES that so many of these kids experience. And, so that families like ours will not feel they are alone. It was others' sharing their story, their experiences, their journey that helped us see we are not alone....and that although our son has a rare allergy, he can be helped, he can heal. And most of all, he can grow and thrive- despite all his struggles.