“It is not the strength of the body that counts, but the strength of the spirit.” ~ J.R.R. Tolkien
Epidermolysis Bullosa is a rare disease that affects 1 in 50,000 children born throughout the world as a result of a genetic disorder. It varies in severity among its sufferers. It is characterized by a defect between the anchoring of the skin between the epidermis (top layer of skin) and the dermis (second layer). People who suffer from EB suffer from skin fragility, blistering and constant pain. “Butterfly Children” is what kids with the disorder are called due to the fragility of their skin. A group of designers and bloggers in SL are putting on the EB Awareness Event with proceeds going to DEBRA of America, a national research charity group dedicated to curing EB. Thank NatashaAngelFire and Cerise Emor for putting this event on and organizing it in a little over a month. Cerise volunteers to help children with this condition in RL. Designers are all donating part of the proceeds from sales to DEBRA of America.
I agreed to blog for the EB Awareness event because I knew a boy in my high school when I was growing up who had this devastating disease. Rolled from classroom to classroom in a wheelchair by a special education teacher, Adam was one of the best students in my Advanced Geometry class. His skin was friable and ruddy. His face looked raw and painfully exposed with scabs and irritations all over his face and head. His hands and feet were stumps. He resembled an old man more than a child.
No one picked on Adam—that would have been too overt. He was simply invisible. He could not participate in regular school activities; he was rolled around between classes to avoid getting hurt by the boisterous physicality of high school kids. He was welcomed by us geeks in Advanced Geometry; we understood being invisible. When he participated in class—raised his hand or laughed with us—we were heartened. (He was really cute when he laughed.) That year in that class was solely remarkable to me for his presence.
I am sure Adam has died. His skin was very fragile; he was truly debilitated physically, though clearly not intellectually or emotionally. He was a normal boy in a body that failed to contain him due to a genetic anomaly that was no one’s fault. I am glad he got the opportunity to join us in that class and in high school. We were the better for having him in our company.
Now I am not sure how thrilled Adam would feel being called a “butterfly,” but the theme stands. AnneMarit Jarvinen has contributed to it with these gorgeous poses with a butterfly prop and floral backgrounds. Tella Twine is donating 100% of her proceeds from the sale of two dresses, available in several colors including this lovely pink one I am wearing. She also has a gift for visitors. My shoes, from Tash Porthos, are an event exclusive (she also has a dress) and my nails and makeup are lovely donations from AnneAlyce Maertens.
My lovely skin has butterflies around the eyes and it’s an exclusive offered by Marisa Gregan. She has appliers available for the skins, so do not hesitate to check this out. My hair is an exclusive from Kohana Xue, who is also offering two “Spring” packs of other hairs only at this event. I love my orchid necklace from Hannah Daviau with butterflies flitting around, perfect for spring. Consider the generosity of these creators for the Butterfly Children and their fragile lives and spend lavishly.
“… [A]nd when all the wars are over, a butterfly will still be beautiful.” ~ Ruskin Bond
Eyes: #adored – dream eyes – velik by Constance Daehlie for adored
Hands: Slink Mesh Hands (av) Casual Right and Slink Mesh Hands (av) Relaxed Left by Siddean Munro for Slink