Wednesday, March 13, 2013

Butterfly Tile

I started following a facebook page called "Support baby Easton Friedel" months ago. He is a baby born with an awful disease EB. Below is what his facebook says about him and his EB diagnosis. Due to me following baby Easton I began to then follow other kids with EB on facebook. One of them is Ian Swarr. Ian is a spunky almost 15 yr old who is a strong EB fighter. Because of that.....he wants to be a fireman. He loves all things firefighting. Oh and below youll read why...but EB kids are dubbed "butterfly children" because their skin is as fragile as butterflies wings. So I drew up a Zentangle in a Butterfly string to send to Ian. He loves mail, and homemade gifts, so I thought he might like my buttertangle. :-)

He was quickly diagnosed with a severe form of Epidermolysis Bullosa (EB). EB is a rare genetic skin disease (affecting only 1 out of 50,000 births). In this condition, there is a defect in the connective tissue of the skin and mucous membranes that causes the skin to be so fragile that the slightest friction, minor injury, heat, rubbing, or scratching causes severe blistering —inside (such as the mouth, stomach, esophagus) and outside the body. These blisters can cause serious, sometimes fatal problems, when they become infected. The systemic and repetitive nature of the blistering leads to blindness, swallowing and breathing difficulties, scarring, infection, disfigurement, disability and dehydration. Ultimately, such devastating effects can produce a high rate of mortality. In fact, 87% of babies born with one of the more severe forms of EB do not live more than 12 months. There is NO cure for this horrific disease. Sufferers of EB have compared the sores with third-degree burns. They live in unthinkable pain.

With skin as fragile as butterfly wings, EB patients are dubbed “Butterfly Children." On the outside, physical wounds and limitations brought on by this disorder prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease.

The following is what it’s like to be diagnosed with one of the more severe forms of EB:


•a child with painful wounds similar to burns covering most of his or her body.
•having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.
•never being able to hold your child tight because if you did, their skin would blister or shear off.
•a child who will never know what it’s like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
•a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
•a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.
•an active baby with his knees soaked in blood from the normal act of crawling.
•a teenager with stumps for hands, the affected fingers scarred/healed together.

1 comment:

  1. An absolutely amazing tangle, such a sad condition - I've never heard of it before.