On EE: A Post For Oprah!
I've wrote before about my son's Eosinophilic Disorder. Specific posts are Living With Eosinophilic Esophagitis and severe food allergies , Eosinophilic Esophagitis and Foods To Eat, and The Ice Cream Truck Crisis.
I don't talk about my son's illness every day. I try not to sound ungrateful and wallow in self-pity when others have it so much worse than us. But as our son's health has declined recently even with treatment, I've found myself more vocal and advocating more. I want everyone to hear his story. His story as well as other EOS kids stories deserve to be heard.
Take one minute and imagine your life without food or even limited foods? Can you?
Our son can't go out to eat. He doesn't get to enjoy the ice cream truck, Halloween candy, or birthday parties like other children do. When most kids are asking, "What's for dinner?" our son is asking, "Will I puke it?" He was diagnosed with an Eosinophilic disorder at the age of 2 and now at the age of 5 1/2 he's not growing well. He's lower than the 5 percentile on height and weight. He looks more like a 3 year old than someone going on 6. Despite the puking and pain, he's an energetic, clever, and artistic little boy. There's just something special about EOS kids...
Recently Greyson's doctor discussed the possibility of a feeding tube. We are now at a place that I never thought we would be. With that, My fear has been turned into action. We can no longer stay silent about this illness. We need a cure for our children.
Today a facebook group of EOS parents are sending Oprah ( and other shows) over 100 emails to raise awareness for this heartbreaking illness. While I'm not an avid Oprah watcher, I'm taking part by writing this blog post in hopes that someone will recognize just how devastating this illness is on our children and the whole family. I hope you will join me by sharing this on your facebook page, tweeting about it, writing Oprah, or even writing a blog post of your own. If you have any questions I'm always available via email, facebook, or Twitter.
For more information on Eosinophilic Disorders you can check out APFED, CURED, and CCED.
How can Oprah resist this beautiful face?
Labels: Eosinophilic Esophagitis, food allergies
I've wrote before about my son's Eosinophilic Disorder. Specific posts are Living With Eosinophilic Esophagitis and severe food allergies , Eosinophilic Esophagitis and Foods To Eat, and The Ice Cream Truck Crisis.
I don't talk about my son's illness every day. I try not to sound ungrateful and wallow in self-pity when others have it so much worse than us. But as our son's health has declined recently even with treatment, I've found myself more vocal and advocating more. I want everyone to hear his story. His story as well as other EOS kids stories deserve to be heard.
Take one minute and imagine your life without food or even limited foods? Can you?
Our son can't go out to eat. He doesn't get to enjoy the ice cream truck, Halloween candy, or birthday parties like other children do. When most kids are asking, "What's for dinner?" our son is asking, "Will I puke it?" He was diagnosed with an Eosinophilic disorder at the age of 2 and now at the age of 5 1/2 he's not growing well. He's lower than the 5 percentile on height and weight. He looks more like a 3 year old than someone going on 6. Despite the puking and pain, he's an energetic, clever, and artistic little boy. There's just something special about EOS kids...
Recently Greyson's doctor discussed the possibility of a feeding tube. We are now at a place that I never thought we would be. With that, My fear has been turned into action. We can no longer stay silent about this illness. We need a cure for our children.
Today a facebook group of EOS parents are sending Oprah ( and other shows) over 100 emails to raise awareness for this heartbreaking illness. While I'm not an avid Oprah watcher, I'm taking part by writing this blog post in hopes that someone will recognize just how devastating this illness is on our children and the whole family. I hope you will join me by sharing this on your facebook page, tweeting about it, writing Oprah, or even writing a blog post of your own. If you have any questions I'm always available via email, facebook, or Twitter.
For more information on Eosinophilic Disorders you can check out APFED, CURED, and CCED.
How can Oprah resist this beautiful face?
I don't talk about my son's illness every day. I try not to sound ungrateful and wallow in self-pity when others have it so much worse than us. But as our son's health has declined recently even with treatment, I've found myself more vocal and advocating more. I want everyone to hear his story. His story as well as other EOS kids stories deserve to be heard.
Take one minute and imagine your life without food or even limited foods? Can you?
Our son can't go out to eat. He doesn't get to enjoy the ice cream truck, Halloween candy, or birthday parties like other children do. When most kids are asking, "What's for dinner?" our son is asking, "Will I puke it?" He was diagnosed with an Eosinophilic disorder at the age of 2 and now at the age of 5 1/2 he's not growing well. He's lower than the 5 percentile on height and weight. He looks more like a 3 year old than someone going on 6. Despite the puking and pain, he's an energetic, clever, and artistic little boy. There's just something special about EOS kids...
Recently Greyson's doctor discussed the possibility of a feeding tube. We are now at a place that I never thought we would be. With that, My fear has been turned into action. We can no longer stay silent about this illness. We need a cure for our children.
Today a facebook group of EOS parents are sending Oprah ( and other shows) over 100 emails to raise awareness for this heartbreaking illness. While I'm not an avid Oprah watcher, I'm taking part by writing this blog post in hopes that someone will recognize just how devastating this illness is on our children and the whole family. I hope you will join me by sharing this on your facebook page, tweeting about it, writing Oprah, or even writing a blog post of your own. If you have any questions I'm always available via email, facebook, or Twitter.
For more information on Eosinophilic Disorders you can check out APFED, CURED, and CCED.
How can Oprah resist this beautiful face?
Labels: Eosinophilic Esophagitis, food allergies
Permalink posted by PetiteMommy at 12:40 PM
7 Comments:
when i hightlite Oprah the link goes to a music page. Do you have a link to go directly to Oprah page so can write letter for Eos kids.
Here's the link to email Oprah
http://www.oprah.com/ownshow/plug_form.html?plug_id=216
Hi Amanda,
My heart goes out to you.
My daughter & I both have severe food allergies,& I've gone into anaphalatic shock twice -it's ain't pretty.
So, I can't imagine having the problems with all foods & the feeding tube must be such a heart breaker.
Thanks for sharing - all the best for your son, & I'll spread the word.
Lesley
I'm sorry to read this and know how bad it is for him and your family.
I don't know even a 10th of what you're going through, but our son does have quite a few intolerances and it is a daily struggle.
No child should have to live with what your child is living with.
And no parent, for that matter, should have to see their child suffer.
Nell
So sorry to hear about your son's illness.
I hope you get to raise awareness about this.
I can't imagine. It sounds heartbreaking! I hope Oprah listens!
I am so sorry. I hope Oprah's staff listens. She would help illuminate the information on this illness. So many illnesses with our world's children.~~Dee
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