It was a beautiful afternoon and my girls were so excited--
the long-awaited baking had begun! Since
they both have separate safe food lists and separate baking equipment, each
girl got her own turn in the kitchen with mama.
My eldest tied on her apron, read the recipe, and started measuring.
When I reached over to help, she turned to me and smiled sweetly, saying,“I can
do it myself this time, mama. I'll be OK.”
As parents, we often find ourselves moving towards milestones---
waiting for that first smile, that first sweet sound of our babies' voices,
that first wobbly step. The first tiny move towards independence! As parents of
children diagnosed with FPIES, milestones often take on a different meaning. We
learn to celebrate the “ordinary moments” as extraordinary milestones-- a first
food after months of reactions, a new texture that is finally tolerated, that
first shared family meal.
Five incredible years have passed since The FPIES Foundation
incorporated. Five years of meeting new families, hearing of heartaches and
victories, struggles and successes. Five years of meeting and partnering with
compassionate and caring medical professionals, expanding medical education
resources, and lighting the flame of awareness in places where FPIES was once
unheard of. This has been a monumental five years, and what has made it so
monumental has been sharing in this journey and these milestones together.
You were with us when we took our first step on August 31,
2011, launching The FPIES Foundation and debuting our website. You were with
us, empowering other families day after day, year after year, to find their
voices through our toolbox and resources. You were with us, advocating for
other families as you shared your own families' inspiring stories. And you are
with us today, ensuring The FPIES Foundation continues to be a home for
resources, support, and advocacy. This is the house that awareness built, with
an incredibly strong community at the core of its Foundation.
From our beginnings, we have dedicated ourselves to
overcoming the challenges of FPIES by offering tools for education, support and
advocacy to empower families and the medical community. In the ordinary, daily
life with FPIES, we have found extraordinary connections. We look to the future
as we continue to invest in education, awareness, research and support for all
affected individuals, their families and the medical professionals that serve
them. Together, we will continue to be the Voice for all those affected by
FPIES worldwide; together, we will continue to take big steps for the smallest
of patients. Thank you for helping us build the Foundation together---
yesterday, today and tomorrow!
