Comments on: I Love Someone Who is Rare | Rare Disease Day #FPIES

By: Jeannette

Jeannette — Fri, 07 Mar 2014 19:11:40 +0000

Just found your blog and while snooping around…found this post! My son also has FPIES (to rice, oats, squash, turkey, and dairy so far) and I love to see mommas raising awareness! It was such a scary road getting to the diagnosis because doctors (and the public) are so unaware of the syndrome. Now that we have found several safe foods it feels like we live a semi-normal life now 😉 Thank you for sharing!! Great job!!!

By: Terra Heck

Terra Heck — Fri, 07 Mar 2014 10:54:37 +0000

Although the day has passed, I think it’s wonderful that there’s a ‘Rare Disease Day’ to help bring awarness to showe diseases that we may not know about. I’ve never heard of FPIES before.

By: Mickey

Mickey — Tue, 04 Mar 2014 03:09:31 +0000

I wasn’t aware of it, but hear more and more about families dealing with FPIES so I’m glad there is more awareness for them.

By: Joyce@MommyTalkShow

Joyce@MommyTalkShow — Tue, 04 Mar 2014 02:24:33 +0000

This awareness is really needed.
I saw a similar story of a boy like your son on Anderson Cooper’s talk show.
A major organic grocer donated a year’s worth of apples to his family so he could stay healthy.
Wishing you all the best with his tests.

By: Debra

Debra — Tue, 04 Mar 2014 01:33:02 +0000

Wow, I had never heard about FPIES before. It must be incredibly challenging and hard for you, your family and especially your son. I hope that you’ll be able to find more safe foods for your son – and that more research can help out!

By: Kelsey Apley

Kelsey Apley — Mon, 03 Mar 2014 22:23:27 +0000

I learned about this for the first time like a month ago on someone else’s blog. Their child had the same thing.. very scary! Hope you can find friendly foods!

By: Maria

Maria — Sat, 01 Mar 2014 15:33:47 +0000

I don’t know anyone else whose child has F.P.I.E.S.! Fortunately my 4-year old’s only trigger is sweet potato. Thoughts & prayers for your little guy.

By: Courtney

Courtney — Sat, 01 Mar 2014 14:50:03 +0000

Thank you for helping raise awareness, Emily! I’m so happy that I have been able to help quite a few families with their FPIES diagnosis with the power of social media and I’m sure you’re doing it too! We are warriors for our babies and other babies too! I originally thought to myself not to assume, but I knew Baby D had FPIES right away. I couldn’t NOT reach out to you! So glad that things are progressing for you guys and he’s having gains (weight)! I hope Baby D outgrows it quickly and has tons of save foods like us within the next few months, years.

By: Andrea

Andrea — Sat, 01 Mar 2014 02:16:14 +0000

Wow! How hard for all of you. I hope that they are able to find more safe foods for your sweet boy.