When Jacky was first diagnosed, I googled FPIES and Food Protein Induced Enterocolitis Syndrome.
NOTHING CAME UP!!!
Nothing at all.
I was afraid and I felt totally alone.
So I posted the video of him reacting to soy on YouTube.
This video is a record of myself taking Jack to his doctor to give him soy and video tape his reaction. No one believed me, our pediatrician and all of the doctors that had dealt with Jack did not think that he was suffering from more than a flu. The pediatrician in this video believed that Jack's episodes were tantrum related. I had to prove her wrong, I had to prove the world wrong, I owed it to Jack.
Now it has had 6,095 views.
The video has been used in American and European medical research and conferences.
Still feeling alone in the battle, I began a blog, which has helped us meet other parents of kids with FPIES.
Then came the support group. 58 families with children with FPIES visit and share their experiences, recipes, regrets, hope and friendship.
We have helped each other find doctors, made helpful phone calls to one another, organized play-dates with each other, supported each other during hospital stays, etc...
I want to thank all of you!
Jack wants to thank all of you!!!
(by the way, google FPIES now, it's amazing!)
