This article is about Rafl Kopelan, a 5 year old girl diagnosed with a rare disease called epidermolysis bullosa, a rare connective tissue disorder. This rare genetic disease causes Rafl to be covered head to toe in blisters, with the slightest amount of friction. Her organs are also affected by her disease, it damages her heart, eyes, and basically everything. Not one part of her body is unaffected by EB. Because this disease is so rare, there aren't many treatments for it and there isn't a cure either.
http://www.cnn.com/2013/02/23/health/rafis-run/index.html?hpt=hp_c3
The struggle in this article is struggle against circumstance. Rafl was born with EB and unlike other children, she has to live everyday with the pain of being hurt just by hugging a stuffed animal. Her family also struggles with finding the necessary treatments that would at least make Rafl's everyday life better. Though I can't imagine the pain Rafl has to deal with physically I feel that she is surrounded by those who love her. Her family and neighbors all create fundraising events to raise money and spread awareness of EB. In this way, Rafl Kopelan is very lucky.
I agree that Rafi is a very lucky girl because of all the support that has been given to her by the people that care about her. I just wish that there was a way to cure or treat the illness that she has so that she could enjoy her childhood.
ReplyDeleteIt's really unfortunate that Rafl was born with such a rare disease that cannot be cured. When I was her age, I used to cry from just one blister, but I can't imagine my entire body being covered in blisters. I'm happy the Rafl has a family and people that care about her. Love is more than enough.
ReplyDeleteI wish that Rafl didn't have to go through this much pain at such a young age. It mus be very hard for her to look at other children her age and ask herself why she's not able to do what they do. I'm extremely happy that she is surrounded by a community that loves her, I think it will help her get through this disease. It's stories like these that make us realize how lucky we are to have the life we have and appreciate it.
ReplyDeleteI hope she is able to look at her situation the way we do, for no one deserves to go through the suffering poor Rafl is going through. I hope she can still live out the rest of her life as happily as she possibly can with the love of those who love her. Nice to see some optimism:)
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