“I always thought someone should do something about that,
then I realized I was someone.” ~ Lily Tomlin
FPIES and Advocacy are words that seem to go hand in hand. Many times, for me, the word "over-advocate" has come to mind; but that is another story for another day. Today, the story is on Advocacy in complex diagnosis. Complex Child E-Magazine put a call out for parents who have advocacy stories to share them for their September edition, highlighting Advocacy. As I mentioned above- I have a few on how I've had to advocate, and too many times, over-advocate for Little Man's needs (medical, physical, psychological, etc). All of these the inspiration to the one that I felt compelled to tell...the story of the beginning of The FPIES Foundation. I wanted to help others feel empowered with the education and support they needed and to advocate where needed- for their children, for the diagnosis, for children that may follow in the spectrum of this diagnosis. No one should travel this journey alone. A Foundation was needed, a Foundation I, along with 8 other moms and a community of families, created. We created it to help families advocate for their little ones and their families within the challenging situations that a rare and little understood diagnosis of FPIES was, and remains yet. A Foundation whose mission is woven into every ounce of our work, dedicated to offering tools for education, support and advocacy to
empower families and the medical community.
You are invited to read more about the beginning of The Foundation for FPIES in the September edition of Complex Child:
FPIES, The Formation of a Foundation.
