Joy and Her World

 Joy M was born to very loving parents on January 9, 2002. She is the last among a brood of three children.

Joy lives in a village in the burrough of Laylay, in the town of Boac, in Marinduque, Philippines.  Marinduque is very well know for its butterfly industry.

Joy was born with a terrible medical condition, called Epidermolysis Bullosa.

From Wikipedia:

“Epidermolysis Bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.”

“The skin has two layers; the outer layer is called the epidermis and the inner layer the dermis. In normal individuals, there are “anchors” between the two layers that prevent them from moving independently from one another. In people born with EB, the two skin layers lack the anchors that hold them together, and any action that creates friction between the layers (like rubbing or pressure) will create blisters and painful sores. Sufferers of EB have compared the sores to third-degree burns.”

“Butterfly Children” is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly’s wings.

“Children with the condition have also been described as “Cotton Wool Babies“.

“And in South America, “Crystal Skin Children” is the term used”

 

 

Next:

Joy’s Plea

Joy’s Family

Marinduque