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."
Wednesday, August 31, 2011
Educate, Support, Empower....
Before our son's diagnosis, it took many months to narrow down, and rule out, what was making him sick. Doing the research was empowering, finding other families going through the same experiences was like coming home. The support not only saved my soul but educated me.
I joined an amazing group of families going through similar experiences on support forums and began to see the need for this invaluable shared information to be compiled, and connected, for families just beginning their journey in FPIES. So much knowledge locked up in these support forums, now all sitting in my head, heavy in my heart that moms, like me, laying awake at night wondering what to do about the vomiting, about the crying, about the lack of weight gain, the weight loss, and what to FEED their child, their infant baby, and why is this so hard? and is there anyone else out there going through this?
I continued to learn more from the research that is available about FPIES and Non-IgE food allergy. There is so little known, much less understood about this rare allergy. A rare allergy that primarily affects infants at a time when you should be enjoying their sweet baby smells and not cleaning up vomit, a time when coos and giggles should be heard and not screams of pain; a time when you are enjoying being a mom instead of losing so much time in doctor visit after doctor visit.
This journey has been difficult, I know I share much of that here- not in pleas for sympathy but in sharing our story might help another family feel less alone. In raising awareness. Along this journey, I have met so many families. Families from other country's, families from all over this country, families with classic FPIES children, families that share Little Man's atypical FPIES symptoms, so many connections made, so many new friendships born. A common bond within a rare disease. A handful of these families shared a vision to create this Foundation. I am proud to be among the founding members of this great foundation. I will strive to help provide reliable medical information for families to connect with a team of doctors to help their FPIES child thrive, improved treatment plans to increase the quality of life for all children affected by this diagnosis, as well as supportive services for families struggling within the stages of this chronic illness.
Educate, Support, Empower. Join us at The FPIES Foundation