Rare Diseases Day: FPIES - Ginny's Journey

   

Ginny's Journey

On May 15, 2010 I went to the grocery store after feeding my 6 month old daughter rice cereal and putting her to sleep. I came back a short while later to find her grey, cold, unresponsive, and vomiting repeatedly and profusely as my husband held her in his arms. We rushed to the emergency room (for the first time); me holding my child in my arms in the car the whole way chanting, "It's okay. It's okay. You're going to be okay. You can do it. You can make it. We'll be there soon. Keep breathing. You can do it." We left the ER many hours later without any answers. That was our start down a long road filled with questions, fear and uncertainty. Our world really changed that night, even though we didn't know it at the time.

Genevieve has ‘classic’ FPIES. She reacts to rice, soy and oats although, to date, she also has 26 foods on her safe list. Like most families, our road to diagnosis was difficult and filled with an overwhelming number of doctor appointments, tests and fear. However, we are hopeful that Genevieve will outgrow her FPIES. Although FPIES has brought us many trials - with doctors, with acceptance, with understanding, with logistics and, of course, with food, it has also brought us knowledge, faith, determination, patience, an incredible support system and a better appreciation of family, our health and the blessings we do have in our lives.

 

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Video:
Med Watch: A rare food allergy doctors know little about

Check out The FPIES Foundation at www.thefpiesfoundation.org
Support The FPIES Foundation at http://www.iGive.com/TheFPIESFoundation/