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."

Thursday, February 2, 2012

News Article

I have been behind on my blogging recently, the main reason has been the "push" trials.  I utilize this blog to share my perspective on our son's FPIES- the struggles, the accomplishments:  the journey.  It is difficult to gain perspective in the middle of the muck....the muddy waters of trials, symptoms, reactions - some that follow FPIES, some that are more mysterious as we push through, some that we stop because food just shouldn't make a little boy this sick.  Perspective is a struggle on those days, but it comes. 

A few months ago, we had a fundraiser awareness event for FPIES and to benefit The FPIES Foundation. I contacted the local paper and asked if they would want to help raise awareness for the fundraiser. They not only helped advertise for it, but offered to do a full awareness article About FPIES.  It even made front page news!   The writer did an excellent job in helping us raise awareness, he "read" me well in that I don't like to over-dramatize for any degree of sympathy but to provide information, raise awarenes, even foster empathy....

The reporter did a two part article spread, even putting Little man's picture on the front page! 

"A Search for Food Samuel can eat" and "A happy child with a chronic illness".  The article was done to raise awareness on what it is like for our Little man, who has a complex case of FPIES, to help raise awareness for this little known and often misunderstood diagnosis.   

The reporter did his homework, which I was grateful for.    He explained that little man "has a condition called "food protein-induced enterocolitis syndrome" (FPIES). He is basically allergic to the proteins in foods, including plant and animal proteins....a taste of food his body can't handle and it can be days later before he returns to normal...include pain, severe discomfort and sleep disruption... makes it particularly hard to get him the nutrients he needs. His mother, a registered dietetic technician, is thankful for her training in nutrition."

1 comment: