Cure EB: The Big Give Christmas Challenge
by Damianista | Fan Fun with Damian Lewis | November 27, 2018
Today is Giving Tuesday! It is a a global day of giving we celebrate on the Tuesday after Thanksgiving and kick off the charitable season! So it’s time to be thankful for all the good stuff in our lives and focus on our holiday giving.
Well, most of you know Damian Lewis is a proud patron of Cure EB.
Sohana Collins is a 15 year old teenager who was born with Recessive Dystropic Epidermolysis Bullosa (RDEB) which means she lacks the protein that holds her skin together. Kids with RDEB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Can you imagine a day where your dressing up takes up to two hours and eating and drinking cause blisters in your mouth and throat? These kids have to deal with this kind of pain every single day. Besides, they are under extra risk to develop skin cancer later in life and their life expectancy is not very long. Sohana’s parents Sharmila and James Collins founded Cure EB to raise awareness as well as funds for research to ultimately have a cure for this terrible skin condition.
Here is what Sohana says about EB.
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“EB has affected every part of my life. You have probably only seen me smiling, but often I feel broken and helpless against this condition which, unless people do great things, will take my life. There is hope of defeating #EB and we are so very close to doing just that” Sohana #LifewithEB #cureEB