Running to Save 'The Butterflies'
Imagine your baby being born and not being able to hold he or she after birth because of their skin.
A disease so painful, that a HUG or KISS makes the suffering for those with Epidermolysis Bullosa, worse.
Affected infants with Epidrmolysis Bullosa, or EB, are born with widespread blistering and areas of missing skin. Butterfly Children they call them, because their skin is as fragile as a butterfly's wings.
Epidermolysis Bullosa Facts
- Children born with EB lack protein essential to the development of collagen
- Collagen- “glue” that gives skin its strength and structure
- 1 out of 20,000 births in the US are diagnosed with EB
- The majority of those with EB, do not live past the age of 30
If Epidermolysis Bullosa still isn't all too clear to you, I urge you to play the video up left and watch what children like Jonathan Pitre go through everyday, or continuing reading.
Often, blisters are present over the entire body, including the lining of the mouth and digestive tract. As the blisters heal, they result in severe scarring in the mouth and esophagus making chewing and swallowing painful, which leads to chronic malnutrition and slow growth for those with EB.
At the moment, there is no cure for EB and that is why I have chosen to run with 'DEBRA of America', for the United Airlines NYC Half Marathon on Sunday March 18th.
I am hopeful that you will join me in donating to this cause to help improve the quality of life for all people living with EB, while funding research to find treatments and a cure for EB. I am grateful to be able to run this marathon in honor of those with EB.
Thank you in advance for considering this email and please help me raise awareness for those battling the pain that EB brings them.
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