Eosinophil Awareness Week

It's National Eosinophil Awareness Week. A painful, rare, life-altering disorder that my family and anyone reading Annabelle's story, is all too familiar with.

Many parents, fighters and supporters around the country are celebrating and using this week to actively education and spread awareness for an epidemic that has plaqued our children and loved ones. I am doing my part in a much quieter way this week, we're wearing our shirts and bracelets, but life is just moving a bit too fast in our family to devote the attention this disorder deserves this week. I wish we could be doing more, but I would like to think that Annabelle's Blog and stories are touching hundreds daily on how serious Eosinophil Associated Disorders are to those affected and their families. I would like to believe that instead of focusing only a week during the year, that our family is spreading awareness all the time to you.

If you do want to learn more or how to donate and support all the children and families that are fighting this battle, please visit the sites below.

http://apfed.org/drupal/drupal/Get_Involved
http://curedfoundation.org/site/
Many videos, http://www.youtube.com/results?search_query=eosinophil+awareness


Our babies need a cure.

• We need funding for research.
• We need help.
• We need a bigger support and resource team to help navigate life with this labeled burden (heavy word? ... I tried to think of another, but burden was appropriate. especially with how I am feeling about it today.)
• We need a better way to diagnosis and manage EoE Relapses.
• We need educated healhcare providers that truly understand Eosinophil Associated Disorders
• We need education systems that are equip to provide a fair and valuable education to our sick children.
• We really need unlimited supply of wine for all the momma's and daddy's that spend every waking minute with heavy hearts while raising our children who suffer this unfair disorder. (I don't know this wish will make it to the top of priorities for donations and funding but it's worth a shot). 

Our Governor, Terry McAuliffe had this statement released Sunday.
https://governor.virginia.gov/constituent-services/proclamations/proclamation/eosinophil-awareness-week/


Today on our schedule, living life with Eosinophilic Esophaghitis, we are visiting with a highly respected, very difficult to schedule with, Dr. House in the Mystery Medical World.

Annabelle has been thru the ringer of tests, labs, surgeries, procedures, more tests and more labs - most of which always indicate an abnormality of some sort. None of which have given our doctors the information they need to make an official diagnosis for our baby. We are moving out of the box today and seeing a doctor that practices Natural Medicine. She promises to look at our little girl from a global level. View Annabelle's system as a whole and try to help us understand and decipher how and why her body is operating, fighting and failing in the way it is. We are eagerly anticipating several hours this afternoon to nagivigate piles, and I truly means MOUNTAINS of paperwork and medical records to find some sort of trend to explain Annabelle a little better. I am praying with everything that today will at least, if nothing else, give us a better path to walk down towards finding a diagnosis for Annabelle. I hope today provides us with a direction - with a direction, I can find the best doctors in the world. I just need to know where we are going and I will run. As fast as you can imagine with my baby cub under my arm. I will run.

Stay Tuned.