Mothers Intuition

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."

Sunday, December 1, 2013

FPIES Registry!!

The FPIES Foundation announces the first of it's kind FPIES Patient Registry!  This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!!  A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed.  The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly.   This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.

Please add your voice, your child's voice to this registry.  

1 comment:

  1. I am so excited about this! It will be such an amazing tool, and game changer for our community. Thank you for all your hard work!