I've just learned about a news story that Charles Gibson of ABC is doing on EE (Asher's condition). It will air on ABC on Thursday, January 10th at 6:30 PM ET.
I think the focus on the story is on the refusal of insurance companies to pay for treatment. Children with EE (Asher included) can't eat food - food is the enemy. So they have to drink this nasty tasting formula - or get a g-tube and be tube fed. That's bad enough. However, the formula costs about $1200/month and most insurance companies don't cover it. I can relate.
Did I mention that it's a medical necessity to drink/intake this formula? A kid's gotta get nutrition somehow and if food is the enemy, this formula is the only way they can survive (Asher included).
A link to the description on the ABC Web site can be found here.
If you get the chance, watch this program. It's certain to be enlightening.
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