Wednesday, August 31, 2011

Foundation of Food

The world we live in, although a beautiful place, is also a broken place. Beneath the beautiful facade, we see bits and pieces of evidence that show us that not all things are as they should be. We do what we can to keep the broken pieces from crushing us.

The more noble among us do what they can to help others from being crushed.

Our very good friends, Jason and Nichole, fall into this category.

At an very young age, their daughter was diagnosed with FPIES. Here is what that is:

Food Protein-Induced Enterocolitis Syndrome
is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.

Since FPIES is very rare, and the medical community as a whole knows very little about it, is has been life changing and crushing for them to deal with watching their daughter nearly starve to death because every food was making her violently ill.

As they have navigated through it, they have also connected with other families that are walking the same road. Together, these families have determined to start a foundation to help others that are facing this issue.

Here is what Nichole has to say about why they are a part of this:
"The unknown can be crippling for parents, as well medical professionals. We were met repeatedly with 'we just don't know' and 'there are no studies'. After nearly watching my 18 month old starve to death, I resolved that no parent should experience the pain or fear of navigating FPIES alone. There is hope, there can be healing, and you are not alone."

Here is the link to their new foundation: The FPIES Foundation

Here is Nichole's retelling of her daughter Ellie's story: Ellie's Story (from birth to GAPS)

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