I Love Someone Who is Rare | Rare Disease Day #FPIES

 

Did you know today was Rare Disease Day?

"FPIES" "Rare Disease Day" "Food Allergies"

I didn’t at first either.  Until I signed on to my facebook page and saw updates from my fellow FPIES parents.

"FPIES" "Rare Disease Day" "Food Allergies"

As you may or may not know my baby has FPIES.  He gets life threateningly ill when he ingests food.  So far his only safe food is apples.  Our known triggers are bananas, sweet potatoes, oats, avocados, and possibly coconut.  Pretty soon we will be heading to Denver Jewish Memorial’s pediatric unit to get him tested to find more safe foods.  We will be in the hospital for 10 days.  I’m hoping to find some answers.

The theme of Rare Disease Day this year is CARE. I’d like to share how important it is to care enough to share your story.  We live in a day where social media can reach people and outlets we didn’t have opportunities to do before.  Understandably some families want to keep their journeys or struggles private.  Any disease can be scary and overwhelming.  While I understand that I want to share that by sharing our struggles with Baby D and food online someone cared enough to reach out to me and suggest that I look into FPIES.  Without Courtney’s caring concern and suggestion (her daughter also has the disease) we likely would have had many many more invasive testing, and months until we would have found the right diagnosis.

Another reason to share your story is that there are SO many online communities that genuinely care to help others.  Through support, advice, and so much more.  So reach out and share your journey.  You may be surprised how sharing truly is caring.

What to learn more about our story?

Our FPIES Journey:

Find out what exactly FPIES is.

Read more about Courtney (who shared her story with me) and her daughter’s journey through FPIES on her blog Courtney’s Sweets!

Read more about Rare Disease Day and how you can support families who have children with Rare Diseases.

To all the parents who have a child with or struggle with Rare Disease themselves: Big ((Hugs)) and may you have more better days than bad days!!

You are not alone.

 

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Comments

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

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  2. 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.

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  3. 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.

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  4. 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!

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  5. 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!

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  6. 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.

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  7. 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.

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  8. 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.

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  9. Jeannette says:

    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!!!

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Trackbacks

  1. […] move around our home with minimal worry of coming into contact with a food that would trigger his FPIES.  As with any mobile baby toy we always supervise baby while he is in it, but for us it gives him […]

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