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."
I HEART this picture!!!
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