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You know you're an EB parent when... you can hear your child calling you across…

You know you're an EB parent when... you can hear your child calling you across…

This person Supports Epidermolysis Bullosa Awareness. Please Show YOUR Support! http://www.ebinfoworld.com

This person Supports Epidermolysis Bullosa Awareness. Please Show YOUR Support! http://www.ebinfoworld.com

When people ask me what happened to me I prefer to say that I've fallen off my bike, had a parachuting accident or that a shark has bitten me. It's easier than explaining that I have a genetic disorder. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com         http://butterflychildamothersjourney.com

When people ask me what happened to me I prefer to say that I've fallen off my bike, had a parachuting accident or that a shark has bitten me. It's easier than explaining that I have a genetic disorder. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com http://butterflychildamothersjourney.com

Staring at my child with Epidermolysis Bullosa won't cure it. Please ask, research, understand... #EpidermolysisBullosa #EBawareness #stopEb http://ebinfoworld.com                            http://butterflychildamothersjourney.com

Staring at my child with Epidermolysis Bullosa won't cure it. Please ask, research, understand... #EpidermolysisBullosa #EBawareness #stopEb http://ebinfoworld.com http://butterflychildamothersjourney.com

You know you're an EB parent when... you find yourself more accepting of the struggles other parents go through. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com          #flutter4EB #butterflychildren

You know you're an EB parent when... you find yourself more accepting of the struggles other parents go through. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com #flutter4EB #butterflychildren

Epidermolysis Bullosa Awareness - Support our heroes Today. ebinfoworld.com

Epidermolysis Bullosa Awareness - Support our heroes Today. ebinfoworld.com

Confession of an EB Patient: I hold things back; others aren't always seeing the full extent of the challenges I face. Love and grace are sunshine to the soul, and sometimes crucial for getting through the day. Epidermolysis Bullosa Awareness ebinfoworld.com

Confession of an EB Patient: I hold things back; others aren't always seeing the full extent of the challenges I face. Love and grace are sunshine to the soul, and sometimes crucial for getting through the day. Epidermolysis Bullosa Awareness ebinfoworld.com

You know you're an EB parent when... you become the pain med fairy... #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com           http://butterflychildamothersjourney.com

You know you're an EB parent when... you become the pain med fairy... #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com http://butterflychildamothersjourney.com

EB Fact - There is no known cure for EB, only ameliorative tactics for keeping the sufferer comfortable. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com             http://butterflychildamothersjourney.com

EB Fact - There is no known cure for EB, only ameliorative tactics for keeping the sufferer comfortable. #EpidermolysisBullosa #EBawareness #stopEb #EBaware http://ebinfoworld.com http://butterflychildamothersjourney.com

Her advice for other parents who have children with EB? "Let them set their own limits - don't hold them back. Nicky is more on the cautious side, but many kids don't mind getting a blister as a tradeoff for riding a roller coaster. Enjoy them. It's tough, but they can do it. #ButterflyChild http://www.butterflychildamothersjourney.com  #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Her advice for other parents who have children with EB? "Let them set their own limits - don't hold them back. Nicky is more on the cautious side, but many kids don't mind getting a blister as a tradeoff for riding a roller coaster. Enjoy them. It's tough, but they can do it. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

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