Pinterest

Explore Vietnam, Butterfly and more!

Butterfly Love.....: UK to Vietnam..

Butterfly Love.....: UK to Vietnam..

Tripp Roth, 2, from Ponchatoula, La., died in his mother’s arms Saturday after battling junctional epidermolysis bullosa (junctional EB).    Read more: http://www.foxnews.com/health/2012/01/16/louisiana-toddler-dies-after-two-year-battle-with-rare-skin-disease/?test=latestnews#ixzz1jfySQssw

Louisiana toddler dies after 2-year battle with rare skin disease

Tripp Roth, 2, from Ponchatoula, La., died in his mother’s arms Saturday after battling junctional epidermolysis bullosa (junctional EB). Read more: http://www.foxnews.com/health/2012/01/16/louisiana-toddler-dies-after-two-year-battle-with-rare-skin-disease/?test=latestnews#ixzz1jfySQssw

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(}

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.

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!

Depending on the type of epidermolysis bullosa, blistering may occur in the top layer of skin (epidermis), the bottom layer (dermis) or the layer that separates the two (basement membrane zone).

Depending on the type of epidermolysis bullosa, blistering may occur in the top layer of skin (epidermis), the bottom layer (dermis) or the layer that separates the two (basement membrane zone).

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.

RIP, baby Tripp Roth. Your short life will carry on in our hearts.

cried when I seen this...didn't know he passed away

RIP, baby Tripp Roth. Your short life will carry on in our hearts. cried when I seen this...didn't know he passed away

Sam Hall - Chasing Tornadoes With Epidermolysis Bullosa

Chasing Tornadoes With Epidermolysis Bullosa

Sam Hall - Chasing Tornadoes With Epidermolysis Bullosa

Please take the time to learn about Epidermolysis Bullosa (EB)

Please take the time to learn about Epidermolysis Bullosa (EB)

Help Jax....... Please repin & ask friends to repin etc...

Help Jax....... Please repin & ask friends to repin etc...

Jonny Kennedy (1966-2003) He had a condition known as dystrophic epidermolysis bullosa (EB or DEB). It's an inherited connective tissue disease causing blisters in the skin and mucosal membranes. As a result the skin is extremely fragile and minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, which is what led to Jonny's death. He had a great sense of humor, strength of spirit…

Jonny Kennedy (1966-2003) He had a condition known as dystrophic epidermolysis bullosa (EB or DEB). It's an inherited connective tissue disease causing blisters in the skin and mucosal membranes. As a result the skin is extremely fragile and minor mechanical friction or trauma will separate the layers of the skin and form blisters. People with this condition have an increased risk of cancers of the skin, which is what led to Jonny's death. He had a great sense of humor, strength of spirit…

Cafepress offers several items for EB awareness...

Rectangle EB Awareness Magnet

Cafepress offers several items for EB awareness...