Did you know today was Rare Disease Day?
I didn’t at first either. Until I signed on to my facebook page and saw updates from my fellow FPIES parents.
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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