Valuable quotes

"No person is your friend who demands your silence, or denies your right to grow." ~~

"The minute you start talking about what you're going to do if you lose, you've already lost." ~~

Cree Prophecy - "When all the trees have been cut down, when all the animals have been hunted, when all the waters are polluted, when all the air is unsafe to breathe, only then will you discover you cannot eat money." ~~

Saturday, March 20, 2010

What if you could no longer eat food because it made you sick?

I am taking the liberty of putting this on my blog because it is such a heart wrenching situation I feel it has to be heard. People need to read this, they need to learn about it - they need to press the powers that be to help babies like Izzy and her family as well. Especially her family.

Kelley is a friend of mine and is Izzy's mommy. She loves her little girl as much as any mother could possibly love a child! Her pain when her baby is sick is probably worse than any pain she herself would have. But she has to watch as her baby suffers every hour of every day of every week. Can you put yourself in her place for only a moment without having your heart begin to ache? Because I can't.
I can't even begin to imagine how her and her husband feel every hour as they battle this disease and yes, even sadder, have to battle the health insurance companies to get help for their baby. And try to make doctors understand what life is like for them on a daily basis.
I am hoping that if I can't do nothing else, I can at least bring this to my readerships attention and from there, just maybe there will come a time when this disease is found only in old medical books.
Here is Izzy's Mom's note I read just hours ago - that provoked me into including it here.

"What if you could no longer eat food because it made you sick?"

My Husband wrote this late last night. We are trying to bring awareness to the disease our daughter has so that hopefully one day we can encourage more research and find a cure!!

Allergies aren’t that big of a deal. Right? What if you couldn’t eat most foods or even any food at all? This is the struggle my 2-year-old daughter, Isabelle, is facing. Isabelle battles a nefarious and unpredictable disease called Eosinophilic Esophagitis (EE) where all food can be the enemy.

It’s incredibly ironic that the one thing that is supposed to sustain us can actually be the one thing that hurts us. If she eats dinner, the white blood cells attack. If she picks up a potato chip off the floor and eats it, the white blood cells attack. If she nibbles a little chocolate egg, the white blood cells attack. When the white blood cells attack, they strike her digestive system, destroying her little esophagus, inflicting severe tissue damage and creating pain few can imagine let alone bear on a daily basis. That is the nature of this disease which was only discovered 10 years ago. Food is life. We need it. We celebrate it.

In our family, it’s dramatically different. Food is approached with caution. Mom and Dad evaluate every single type of food Isabelle puts to her lips. It is constant diligence and it is exhausting. What most families take for granted in sharing a meal, our family has to read a label for ingredients, prepare it without cross-contaminating it, and hope it won’t make our child sick.

Trying to stop a child from the innocent act of wanting to eat something, anything, is excruciatingly difficult. Food is about socializing. When we meet, we eat. When we gather, we eat. When we have fun, we eat. Everyone gets to eat, except the child with EE. He or she is left to survive off an amino acid-based formula which provides nutrition. It provides no taste(bad taste), no pleasure, and no sense of fulfillment. It is a struggle for any parent to explain to a child why everyone can eat except him or her.

Let’s not stop there. Since Izzy cannot eat most foods, she hasn’t developed the necessary oral motor skills for speech. At 28 months, she has the speech of a 12-month -old because she can’t eat enough food to strengthen and coordinate her speech muscles. The result is an inability to communicate with her Mommy and Daddy on a basic level when she becomes sick from eating food. Izzy is unable to effectively tell us if and when her tummy hurts, if her throat and esophagus burns, or if she has headaches, another symptom of EE.
We sometimes take our best guess at what might bring her comfort and guide her on regimen of steroids and Proton pump inhibitors (PPIs) that should be reserved for adults 10 times her age.

The biggest challenge right now is that few people have any understanding of the complexity of this disease and how it impacts small children physically, mentally, and emotionally. One day, this childhood nightmare will be eradicated from our world. But today, we need to educate people about EE and build awareness so that funds can be generated for research to help the little ones who rely on us. Help us get the world of EE into mainstream America. So that, if nothing else, a child with EE will never have to hear the ignorant words spewed at them, “Oh, you just have food allergies. That’s easy, just eat something else.” Sometimes, little ears hear and little hearts break.


Kelley said...

Wow!! Thank you so very much Ginger. You just made my heart smile. Love and blessings to you!!!!

Kelley said...

Wow!! Thank you so much for posting. You just made my heart smile!!! It's friends like you who help us through this. Love and many blessing, Kelley

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