Well, it is our first National Eosinophil Awareness Week! And, I am here to make you aware! My son, Timmy (6), has Eosinophilic Esophagitis, Eosinophilic Gastroenteritis, and Eosinophilic Colitis. What in the world does that mean!? Well, basically his body (mainly the white blood cells known as Eosinophils) think food that enters HIS body is a parasite. His body attacks this "parasite" and it makes him VERY ill! As a young child, he was always sick. ALWAYS! And, when Timmy got a cold, he was sick for weeks! There have been several times, these colds developed into pneumonia! The last time he was hospitalized with pneumonia was September of 2006. He was on 80% oxygen for 5 days, and in the hospital for 6! His little body just wasn't able to fight off viruses of ANY kind because it was too busy fighting off "food" he was eating.
After years of trying to get doctors to listen to me...and years of being accused of being a "hypochondriac", over-protective, and paranoid...and accusations of having Munchausen syndrome by proxy...doctors finally starting listening to me! He had polyps removed from his colon at 3 - and then we found out. Well - it's taken 3 yrs, but we have eliminated his diet COMPLETELY! His body has rejected EVERY food. He was actually recently eating DEER ONLY! Venison was his only source of food. I have to add that Timmy does have a feeding tube. He is on a VERY EXPENSIVE, VERY DISGUSTING (that's why he has a feeding tube...wasn't drinking it cuz it's nasty..and not gaining weight-rapidly losing weight actually!), formula that gives him the nutrition he needs to grow and thrive. Well, about 2 weeks ago, after some biopsies were done (the only way to diagnose and monitor this disease internally), the doctor came in and told me that his body has rejected the deer! No more food at all! AND, he is concerned that the formula may be causing problems too! I don't know where to go from there if he is rejecting the formula! There is NOTHING else out there that we are aware of! That's scary!
What's really hard is when Timmy has breakdowns screaming and crying, saying "I'm HUNGRY!" I offer to give him a tube feeding...and he says "I'm not that kind of hungry MOM! I want something to chew on!" So, I offer Ice Chips. "I don't want ice chips...I want something FLAVORED!" I can't do that! I can't give him food..I can't feed my child! He gets INCREDIBLY sick! It's not like I am giving in to a cookie before bed...I would be saying "Ok honey. YOu can have food. I don't care if it makes you sick!" I can't do that! I can't be responsible for him ending up in the hospital!
Even though living with this disease is trying at times. We are trying to stay VERY positive and active in the cause! We want a CURE! I am the head of the Connecticut Chapter of CURED. (curedfoundation.org) I am responsible for fundraising and spreading awareness within my state! It's a great honor. This organization has already (in less than five years) donated $1.2 million to research. They give 100% of their proceeds to research! 100%!!!!!!! Timmy gave a speach recently at a local community college about what it's like for him! He is so brave, and can't wait for that opportunity again! I LOVE HIM! He is my hero! He is a hero to many! He does NOT let this disease keep him down!
To learn more about this disease you can visit http://www.curedfoundation.org/ and http://www.apfed.org/
You can also donate to the cause. A few months ago, I created an image of my son (the picture above!) and Apfed (american partnership for eosinophilic disorders) wanted to use it for their fundraising. So, they turned it into a greeting card! It's under the gift shop, titled Stacey Dionne's Card. It's toward the bottom. It's a very powerful message, and a beautiful image I might say!
Now, I am involved with CUREDfoundation (Cause Urging Research for Eosinophilic Disorders). I try so hard to stay involved. Last year, I helped to get the bill passed to grant the 3rd week in May National Eosinophil Awareness Week! It worked...the bill got passed, and it's official! Help spread the word! Help fund research! You can make a difference! You can! I know we have!
Thank you for taking the time to read this! If you have questions...I would LOVE to answer them!
-stacey dionne
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