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We all have bad days. I want to be able to vent my grief and frustrations without anyone making me feel guilty about them.

I just want people to accept the fact that caregivers have feelings too and all we want is acceptance and understanding.

EB is one of those conditions that is indifferent to race or gender, equally present in all populations on earth.

Just because a condition is rare, that does not mean that people don’t suffer from it. There are millions of people that suffer from rare diseases, mostly uninvestigated and incurable.

Someone that never truly experienced overwhelming grief or horrible circumstances beyond their control, is ill equipped to grasp the concept of how much a little compassion can accomplish.

“Fetal Demise”, they called it, although I challenge any mom, 9 months pregnant, to think of her baby as a “fetus”.

Love & Light,

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