Wednesday, March 18, 2015

A Rare Disease Day Challenge for FPIES

This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES.  We, at the Foundation, found the event very encouraging and asked them to share their story...

Chase's FPIES Challenge started out as a way for me to help my friends and family understand what living with FPIES is all about.   Chase is 3 and by now they have all heard about Chase's 'crazy food allergies,' and some of them even know the lingo, asking about passes, fails, challenges and triggers.  A few may even know what FPIES stands for.  But hearing about it and living it are two very different things.

I challenged them to cook just one meal in the month of February (leading up to Rare Disease Day) that would be safe for Chase to eat.   Chase currently has about 25 safe foods.  I provided clear instructions, and an ingredient list.  I indicated where an ingredient was brand specific or needed to be organic.  I made sure they knew that 'processed in a facility where soy is processed' was a no-go and then I wished them good luck.

Then the questions started coming in.   Can I use pepper?  No.  Can I use spices?  Sea salt only.   Can I use chicken broth.  No!

Then the recipes started coming in.  I was blown away.   My fellow FPIES and food allergy families got it right away.   It warmed my heart that they tried to prepare meals that would be safe for our kids to eat together.  If we could magically erase the miles between us I'm sure we would have!   I was amazed by the culinary skills I never knew some people had and inspired to try some of these creations in my own kitchen.   It brought tears to my eyes when one friend had her 7-year old daughter help her make a kid-inspired safe meal, complete with a handmade menu.

Then one friend really hit home with me, a friend I haven't seen in 13 years! She told me her first attempt at apple blueberry muffins was a disaster.  She admitted she was about to just give up and skip the challenge.  Then she thought of us and thought of Chase and realized that's a luxury we don't have.  She tried again and made some amazing looking muffins.

I can't order pizza because I had a long day at work or rely on a frozen lasagna because I didn't have time to go grocery shopping.   FPIES is our life, at least for the foreseeable future.   We embrace it,  we manage it. We put on a happy face and positive attitude and thank God every day for two healthy boys and the progress Chase continues to make.   But at the end of the day it is exhausting both mentally and physically and there is no room for error.

I truly want to thank everyone who took Chase's FPIES Challenge or even those who just followed along.  FPIES can be isolating but I believe the burden is on those of us living with it to raise awareness.   Truly,  we are not alone!

This article was written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7.

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