Butterfly Child: A Mother's Journey

Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurable, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. https://www.facebook.com/butterflychildbook
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His wounds had to be wrapped. We learned that the hard way. We learned that at Nicky's expense nonetheless. #ButterflyChild http://www.butterflychildamothersjourney.com   #EBawareness #ebaware #stopEB #EpidermolysisBullosa

His wounds had to be wrapped. We learned that the hard way. We learned that at Nicky's expense nonetheless. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

I thought how hard it was for us hominids to learn to accept this raw deal we get with life. yes, we live, but, for how long? So many die at birth, many more die young, some precious few live to be 100. Yet all of us know we will die eventually and all we truly have is today to enjoy. #ButterflyChild http://www.butterflychildamothersjourney.com      #EBawareness #ebaware #stopEB #EpidermolysisBullosa

I thought how hard it was for us hominids to learn to accept this raw deal we get with life. yes, we live, but, for how long? So many die at birth, many more die young, some precious few live to be 100. Yet all of us know we will die eventually and all we truly have is today to enjoy. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

#EBawareness #Epidermolysis Bullosa #ButterflyChild #SilviaCorradin http://www.butterflychildamothersjourney.com

#EBawareness #Epidermolysis Bullosa #ButterflyChild #SilviaCorradin http://www.butterflychildamothersjourney.com

Nicky Baptism - May 1997

Nicky was baptised 3 times, this is the first one, in Alamogordo, New Mexico. Francesca is Nicky's paternal grandmother.

Butterfly Child by Silvia Corradin #EBawareness #epidermolysisbullosa

Silvia Corradin Author of books related to Pregnancy Loss and Epidermolysis Bullosa

Butterfly Child A Mother's Journey #EBawareness #Epidermolysis Bullosa

Silvia Corradin Author of books related to Pregnancy Loss and Epidermolysis Bullosa

Silvia Corradin book list - Author of Biographies, Memoir books.

Silvia Corradin book list - Author of Biographies, Memoir books.

At times I wished I could just "beam Nicky" where I needed him to go like in Star Trek. It would have made things so much easier! #ButterflyChild http://www.butterflychildamothersjourney.com             #EBawareness #ebaware #stopEB #EpidermolysisBullosa

At times I wished I could just "beam Nicky" where I needed him to go like in Star Trek. It would have made things so much easier! #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Life with EB was hard enough to manage and live with; the only thing I asked for was for my son to be able to see the Doctors familiar with his condition. Was I asking for the moon? #ButterflyChild http://www.butterflychildamothersjourney.com            #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Life with EB was hard enough to manage and live with; the only thing I asked for was for my son to be able to see the Doctors familiar with his condition. Was I asking for the moon? #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

I suppose before this day, Nicky never knew he was different, but now he did, and that was very hard for a mom to take. #ButterflyChild http://www.butterflychildamothersjourney.com           #EBawareness #ebaware #stopEB #EpidermolysisBullosa

I suppose before this day, Nicky never knew he was different, but now he did, and that was very hard for a mom to take. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Some had suggested to me that making sure skin heals properly was detrimental and made skin more fragile because scar tissue was harder to injure, but while that might be true for others, I never found this to be true for Nicky. #ButterflyChild http://www.butterflychildamothersjourney.com          #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Some had suggested to me that making sure skin heals properly was detrimental and made skin more fragile because scar tissue was harder to injure, but while that might be true for others, I never found this to be true for Nicky. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

It is hard enough to live with this condition without measuring yourself against some standard of what other EB patients are able to achieve or use. We must truly only be concentrating with what works for us. #ButterflyChild http://www.butterflychildamothersjourney.com         #EBawareness #ebaware #stopEB #EpidermolysisBullosa

It is hard enough to live with this condition without measuring yourself against some standard of what other EB patients are able to achieve or use. We must truly only be concentrating with what works for us. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Keeping hope alive requires persistence and hard work, much more than I ever predicted. #ButterflyChild http://www.butterflychildamothersjourney.com        #EBawareness #ebaware #stopEB #EpidermolysisBullosa

Keeping hope alive requires persistence and hard work, much more than I ever predicted. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

It's hard to realize that even people who deal with sick children day in and day out can still find EB shocking. #ButterflyChild http://www.butterflychildamothersjourney.com       #EBawareness #ebaware #stopEB #EpidermolysisBullosa

It's hard to realize that even people who deal with sick children day in and day out can still find EB shocking. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

That has to be one of the hardest things on the planet, to have to pick out a headstone for your child. No one should ever, ever have to pick out a headstone for his or her child. To know that his beautiful name would have to be engraved into a headstone was beyond my grasp, utterly devastating. #ButterflyChild http://www.butterflychildamothersjourney.com     #EBawareness #ebaware #stopEB #EpidermolysisBullosa

That has to be one of the hardest things on the planet, to have to pick out a headstone for your child. No one should ever, ever have to pick out a headstone for his or her child. To know that his beautiful name would have to be engraved into a headstone was beyond my grasp, utterly devastating. #ButterflyChild http://www.butterflychildamothersjourney.com #EBawareness #ebaware #stopEB #EpidermolysisBullosa

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