Baby Eli {EB Awareness}

3 12 2012

Maybe you remember my post a little while ago about Baby Eason Friedel.

Maybe not.

In any case, its happened again.

Another soul has been born into this world with searing pain.

Meet Baby Eli.  He’s EB’s latest victim.

Born on November 27, 2012.  Look at the date of this post.  Not even a week old.

The skin has two layers; the outer layer is the epidermis, and the inner layer is the dermis. In individuals with healthy skin, there are protein anchors, called dermal papillae, between the layers that prevent them from moving independently from one another (shearing). In people born with EB, the two skin layers lack the protein anchors that hold them together, and any action that creates friction between them (like rubbing or pressure) will create blisters and painful sores..

Donate to Baby Eli

The Butterfly Fund




Baby Easton Friedel

2 11 2012

Heartbreaking, isn’t it?

Baby Easton was born August 23rd, 2012 at Auburn Memorial Hospital and immediately his parents knew something was wrong. He was missing skin on most of his limbs, covered in scary, deep red, open wounds. He came out screaming violently, his weak five-pound, fifteen-ounce body shaking because of the unbearable pain. Auburn Memorial hospital had never seen a case like this so he was transferred to Crouse, where the doctor had only seen 2 in his entire career. Baby Easton was unable to even take a pacifier for comfort because the friction of it against his skin left his lips blistered immediately…so they had to put in a feeding tube and his mom will have to pump instead of nursing him. His pain was eventually controlled with a combination of morphine and Tylenol, and he is on antibiotics to try to prevent infection from his many open wounds. He is getting new blisters from being cleaned after he goes potty…and needs to be medicated to tolerate the pain of cleaning him up. Changing his bandages is also extremely painful and calls for more morphine.  The doctors are talking about moving him from NY to Cincinnati Children’s hospital.  He is the worst case they have ever seen.–Support Baby Easton Friedel

Epidermolysis Bullosa is a rare genetic skin disease.  There is a defect in the connective tissue of the skin and mucous membranes.  This defect causes the skin to be delicate.  THe slightest friction, as slight as a baby moving his arms around, causes sever blistering all over.  Even in the mouth, stomach and esophagus.
The blisters are at great risk for becoming fatally infected.  The relentless blisters often to blindness, infection, disfigurement, disability and dehydration.  They have been compared to third degree burns.   Eighty-seven percent of babies born with EB die within the first 12 months.
It’s unimaginable the pain baby Easton, and many others, go through.  I can’t even bear the though of what baby Easton’s family is going through.  This was their fourth child.  I’m sure no one ever dreamed a genetic disorder possible.
Baby Easton’s medical bills are quite extensive and will not go down when he is released from the hospital.  He will need his special bandages each month costing about $10,000 each month, of which insurance will cover only $1,500.
Please, please spread awareness so that this disease is brought to light and we can find a cure.

Spread the word:

Donate to Baby Easton

The Butterfly Fund