Hoo-boy. When I run across stories like this one, I sometimes wonder if I have any authority at all to be starting this blog:
Rare disease keeps child from eating food (from http://www.cfnews13.com in Florida)
Four-year-old Silas Harger can't eat food
That’s reality for a 4-year-old boy in Lake County who has been diagnosed with a rare disease that makes him essentially allergic to all food.
Instead, Silas Harger drinks a special formula. [Read more]
And the comments just pile up after the story of families with young children who are on their six, eighth, twelfth endoscopy; who can only eat two or three foods; who have spent years with feeding tubes.
The resiliency of these kids is amazing, as is the perseverance and dedication of the parents. Had I known about my full diagnosis and the possible heritability of EE before becoming pregnant, I might have had second thoughts. Now, as a mom, it’s almost unbearable to think about the suffering and discomfort of a child with an EGID. May they all be strong and be well and be cured soon.
