Share How you Care: Rare Diseases Day 2014

From the moment we hold our child for the first time, to catching them when they fall down on the playground, to helping them through food trials and reactions, one of our largest jobs as parents is simply: CARE. 

At the moment our child's medical team meets him or her, we hope to see them learn about our child, foster a relationship with him or her, and work with us to help get our child well as we continue this partnership over time. We look to our children's treatment team to demonstrate that same quality at its core: CARE.

We see it when our older child comforts our young one when he/she can't share a treat, when the playgroup remembers and provides a food-free play space, when rare diseases organizations join together to support patients all over the world in the name of improved quality of life for these patients young and old. 

Care is at the center of our humanity.

This year's Rare Disease Day touches on this theme, one very near and dear to our hearts. Care is the heart of our mission at The FPIES Foundation and care is what truly defines our FPIES community. We have seen family's supporting each other's children without ever even meeting them, sharing recipes/ cooking tips and parenting suggestions, celebrating each other's victories and offering comfort during struggles. 

 We do not have nearly enough space to share all of the acts of care that we witness daily in this incredible community, but to celebrate this Rare Diseases Day, we want to share with our readers a sample of the ways that families affected by FPIES and medical teams supporting them exhibit how they care for someone diagnosed with FPIES:

• "I educate a mom about FPIES every chance I get". ~Jean S.

• "Lots of alternative cooking:-). Almond flour pancakes for lunch today!" ~Erin G.

• "Hug and kiss her little face off!!!" ~Devyn F

• "I look for creative ways to serve his safe foods - it helps him be included at meal times with his brothers." ~Joy M. 

• "Try to teach my two year old girl why can't she eat like everyone else and pray to God that her natural curiosity won't hurt her." ~Heli Z. 

• "I make her days as normal as possible and always remind myself that she is healthy and enjoying life!" ~Katrina P. 

• "I am extended nursing my FPIES baby, my diet is free of her known triggers, I make FPIES friendly meals, research, doctor appointments, ever vigilant about food left out in public, non stop floor sweeping, read ingredients every single time, pack our own meals for family gatherings, outings and vacation. FPIES means no carryout or frozen food even on a busy or sick day. Looking at every sippy cup left out at school, church, park, museum, zoo..... As a danger"  ~Rebecca S. 

• "All the things mentioned above, plus trying to find safe ways to treat my LO when he is sick. He reacts to every medicine we've ever given him, so I try to use those as a last resort." ~Carrie S. 

• "Treating her just like big brother. But she knows what "makes her belly hurt". We've made a point to educate both children. Big brother even tells servers in restaurant "don't give my sister my sister cheese. She has dairy allergies." Love that the whole family is educated enough to watch out for our little girl." ~Jamie H. 

• "Making safe food look like everyones in the family" ~Brandy W. 

• "Loves, hugs and kisses  Also researching formulas and foods in order to keep him healthy when his safe formula runs out."  ~Cyndi M. 

• "Cleaning! Every single crumb on the floor needs to go!"  ~Natasha D. 

• "Every day working towards as much normalcy as is possible, through cooking, educating my small fries and anyone that may encounter them, and finding ways for them to just be kids, despite the craziness that FPIES brings to each day!"  ~Amanda L. 

• "I've learned how to garden and how to cook (beyond just heating something pre-packaged up in the oven!"  ~Victoria R. 

• "Trying many different recipes to find a safe cake or cookie for his first birthday next month...and then finding that he won't eat any of them because of a texture issue! (he gags on anything that is not puréed except cheecha puffs). Sigh. Now going to try more recipes to find a safe pudding that maybe he will enjoy on his birthday!"  ~Abigail M. 

• I get involved with raising Awareness ~Victoria R. 

• "Children and the families of children with rare and unusual medical conditions cry out for help and understanding. All too often those individual cries go unheard- unheard because they are not loud enough to be heard. When these children, their families and their health care providers unite- their unified voice is stronger, that voice and message that it carries is heard and can begin to be understood by others. Strength of purpose comes from joining together, joining talents and strengths to make a real difference." ~Dr.L

Now its your turn--- please tell us how you or someone you love cares for someone diagnosed with FPIES! 

This post was written by the Executive Board of The FPIES Foundation