Melina Caroline
Melina (of Windham, NH) was born in January 2010. A beautiful
9lb, 5oz baby girl with nearly "perfect skin" (as commented on by several nurses and doctors). She had a few small blisters at birth, which we thought were the result of sensitive baby skin. Within 6 days, blisters began to form on her toes and feet. We were quickly thrown into the world of Epidermolysis Bullosa (EB). Our lives were forever changed! Melina has a mild form of EB, known as EB Simplex, presumed Dowling Meara subtype. She suffers from severe blisters and wounds on her feet, and other parts of her body constantly. However, her blisters are not widespread, meaning they do not cover a large portion of her body. Her skin is affected by changes in weather, viruses, growth spurts and too much activity in one day. Blisters are caused by excessive perspiration, repetitive friction, scratching or rubbing the skin and falling down.
9lb, 5oz baby girl with nearly "perfect skin" (as commented on by several nurses and doctors). She had a few small blisters at birth, which we thought were the result of sensitive baby skin. Within 6 days, blisters began to form on her toes and feet. We were quickly thrown into the world of Epidermolysis Bullosa (EB). Our lives were forever changed! Melina has a mild form of EB, known as EB Simplex, presumed Dowling Meara subtype. She suffers from severe blisters and wounds on her feet, and other parts of her body constantly. However, her blisters are not widespread, meaning they do not cover a large portion of her body. Her skin is affected by changes in weather, viruses, growth spurts and too much activity in one day. Blisters are caused by excessive perspiration, repetitive friction, scratching or rubbing the skin and falling down.
What is Epidermolysis Bullosa?
Epidermolysis Bullosa, (EB), is a devastating connective tissue disorder that affects 1 in 50,000 live births. It is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause mild to severe blistering, both inside and outside the body due to a lack of proteins found in the skin. The "glue" is weakened or missing from between the layers of skin. Today there is NO CURE. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and possibly early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal. The only treatment for EB is daily wound care and bandaging.
With skin as fragile as a butterfly wing, EB patients are often called "Butterfly Children”. On the outside, physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who plays, learns and grows despite the pain and challenges caused by their disease.
With skin as fragile as a butterfly wing, EB patients are often called "Butterfly Children”. On the outside, physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who plays, learns and grows despite the pain and challenges caused by their disease.
Perseverence
Melina is strong and determined. Although she suffers in extreme pain every day from blisters and wounds, she maintains a wonderful positive attitude, and has the most beautiful smile. Melina redefines perseverence! She is the strongest person I know!
How can you help?
"I Refuse EB" was launched in 2012 by EB advocate Christie Zink to help raise awareness for EB, promote advocacy and support the research efforts at the University of Minnesota by Dr. Jakub Tolar through the University of MN Foundation (UMF). Dr. Tolar and his team have been studying the use of stem cells to treat children with severe EB. The initial results have been encouraging. So far, results have demonstrated that stem cells from a healthy donor find their way (home) to the skin and secrete the protein that is missing in EB. For the patient, this can mean a substantial reduction in blistering and enhanced healing of the skin.
Local EB Awareness
Windham Independent November 1, 2012
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Windham Independent December 27, 2012
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ABC News has done an amazing piece about EB, (Epidermolysis Bullosa), discussing the critical research and treatment currently being done by Dr. John Wagner and Dr. Jakub Tolar at the University of Minnesota.
The article also focuses on the stories of some very brave EB familites. It's worth the read! |
A purple explosion of EB awareness and support in honor of Melina
I Refuse Epidermolysis Bullosa
This movement was started by the wonderful Christie Zink and is dedicated to raising awareness, being a voice for these children and supporting the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar to cure EB.
The Butterfly Fund
The Butterfly Fund was started by the fabulous Laurie Sterner because of the need to get involved & to make a difference in the lives of people who truly need it. It originated because of the need for awareness and help of those who suffer from EB.
Here is a brief look into our EB reality.
Some photos are graphic and may be difficult to see.
EB Awareness Videos
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