Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Monday, September 5, 2011

The FPIES Foundation

Wednesday morning was the big launch of a project I and a group of 7 other amazing FPIES Mom's have been working on feverishly for the past few months. The FPIES Foundation.

I wrote a very brief post the other day about our foundation but that post doesn't do our foundation any justice! A few months ago I was approached by a friend, a mom, who along with a few others had a vision of a central hub where Families and Providers can all go to learn about FPIES. A place where a mom could go at two a.m. after getting home from the ER, after being up with a screaming baby all night, and find all sorts of resources in one spot instead of search after search, wondering which literature would be the right one to bring to her doctor, wondering which symptoms may be FPIES, wondering what their next step should be in this journey. We are all experienced moms, with children struggling with the unknowns of FPIES. We simply took what we wish we had and put our minds together to create this amazing foundation.

We saw the need for help now, as more and more moms have been coming out lately, having similar questions, replies from their physicians and the other similarities that all of our families share. This is a work in progress, as every foundation I'm sure is, but I feel that what we have launched has already helped so many! Stay tuned as our minds and bodies continue to work around the clock to improve this already amazing cause!!! We are working hard!!!

www.thefpiesfoundation.org

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