Friday, December 5, 2008

Here we go...

I am officially un-veiling the Blolly! After months of wanting to start a blog and weeks coming up with a name, it is finally here... exciting, I know.

When I gave up on trying to come up with a name and asked for help, it was my step-brother who (in all his advertising wisdom) came up with "the Blolly"... and, I like it! Short, sweet, clever, what more can you ask for?

To pay him back (in addition to the treats I promised) I decided to dedicate this first post to him and in doing so want to take some of your time to educate you on a devastating disorder that his baby girl has, called Epidermolysis Bullosa or EB. Here she is:

at about a month old

6 months old

EB is currently an incurable condition with no effective treatment. Epidermolysis bullosa (EB) refers to a group of rare, inherited skin diseases characterized by recurring painful blisters and open sores, often in response to minor trauma, as a result of the unusually fragile nature of the skin. Some severe forms may involve the eyes, tongue, and esophagus, and some may produce scarring and disabling musculoskeletal deformities.

Try to imagine a child with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. This child can never ride a bike, skate, or participate in sports because the normal play of children causes chronic sores. Wounds may cover up to 75 percent of the child's body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years. This describes the life of a child born with the severe forms of epidermolysis bullosa.

~ Molly

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