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Help support Shardai...

Help support Shardai...

Nicky - my daughter is a teacher and this child in her class. His name is Nicky  and is battling this disease. He needs 4000 more signatures so his insurance will pay for the bandages he needs every minute to live. http://www.gopetition.com/petitions/wound-care-bill-petition-for-eb-patients.html

Nicky - my daughter is a teacher and this child in her class. His name is Nicky and is battling this disease. He needs 4000 more signatures so his insurance will pay for the bandages he needs every minute to live. http://www.gopetition.com/petitions/wound-care-bill-petition-for-eb-patients.html

It is an amazing honor to be able to work with Pioneering Unique Cures for Kids (P.U.C.K.) and to work with these beautiful children.  I cannot wait to capture all of their little lights and share them and their story with you.

It is an amazing honor to be able to work with Pioneering Unique Cures for Kids (P.U.C.K.) and to work with these beautiful children. I cannot wait to capture all of their little lights and share them and their story with you.

The Butterfly Fund...helping children, who are at the moment, fragile as butterflies.

The Butterfly Fund...helping children, who are at the moment, fragile as butterflies.

Charlie Knuth (courtesy of FOX 11).

Charlie Knuth (courtesy of FOX 11).

EB'ing a Mom. A inspirational story of a mother and her little drummer boy. Please take a moment to read her story and learn more about Epirdermolysis Bullosa. {)i(}

Southern Child Magazine

EB'ing a Mom. A inspirational story of a mother and her little drummer boy. Please take a moment to read her story and learn more about Epirdermolysis Bullosa. {)i(}

Blake was born in 2011 with EB Epidermolysis Bullosa an extremely rare  genetic skin disorder. The cells in the skin do not work correctly and  the skin is as fragile as a butterflys wings. Hence, the name  "Butterfly Children". No known cure, very painful blisters  that form all over the body and internally. We hope someday soon a  cure is found!

Blake was born in 2011 with EB Epidermolysis Bullosa an extremely rare genetic skin disorder. The cells in the skin do not work correctly and the skin is as fragile as a butterflys wings. Hence, the name "Butterfly Children". No known cure, very painful blisters that form all over the body and internally. We hope someday soon a cure is found!

Andrea Pett-Joseph - Andrea is fighting to build awareness around Epidermolysis Bullosa, a rare genetic skin disorder that affects her son.

Andrea Pett-Joseph - Andrea is fighting to build awareness around Epidermolysis Bullosa, a rare genetic skin disorder that affects her son.

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