Five year old Rafi Kopelan is what might seem to be your typical little girl. Loves games and playing, and loves the opportunity to learn. At first by reading about Rafi you think she lives a normal life. Soon after I kept reading I learned that Rafi's body is covered head to toe in blisters. Rafi's toes are fused together, her esophagus is lined with scar tissues making it almost impossible for her to swallow, something that all of us take for granted everyday.
Rafi was born with a rare connective tissue disorder call epidermolysis bullosa which is shortened to (EB). This disease causes Rafi's skin to break in response to any type of friction. The finest contact to her skin will leave this little angle with blisters, covering almost 75% of her body. EB attacks her organs, leaving damage to her eyes, teeth, heart, and esophagus. This disease is so rare that hardly any treatments exist. Rafi is one of only 15,000 children in the US to suffer from this unfair disease. Knowing their is no cure, eventually EB proves fatal through organ failure or skin infection.
Friends and family of Rafi put together amazing fundraisers and walks to raise money to find a cure for this disease, and they are not giving up. The family hosts "Rafi's Run" to raise money and they are on their second run currently. A few months back, Rafi was the eighth child in the world to undergo a stem cell transplant for EB. It hasn't cured her symptoms but her bone marrow is now able to produce te collagen that she wasn't able to produce on her own before. Every day, to help prevent infections Rafi baths in a watered down bleach and uses special bandages on her blisters. Her parents described this to be just about a two hour process. "It's physically and emotionally exhausting," said Jackie Kopelan, Rafi's mother. "I wish we had more hugs and kisses than baths and bandages." My heart goes out to Rafi and her family. This article just goes to show how many diseases are out there and how so many are so rare that they are just completely over looked. Nothing should be over looked, especially when their are lives at stake, one of them being a five year old little girl.
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ReplyDeleteKelsie- Great article choice! This article was interesting and very sad. Its true that disease doesnt care who it strikes it will infect anyone, regardless of age. Even a young girl like Rafi can be stuck with such a devastating disease. To think a little girl would have to live her life with blisters covering her whole body and bath in watered down bleach everyday is so sad.
ReplyDeleteAfter having read this article my heart goes out to Rafi and her family. It's so awful that this little girl has to live a life full of pain and suffering. I felt a little sense of guilt after learning about Rafi's story. Sometimes when I'm sick with a little cold I complain about missing school or not being able to go out. When in reality I should be lucky that all I have is a minor cold that will go away in days. Hearing about Rafi really put things in perspective for me. I appreciate my health a lot more after reading this tragic article about this poor young girl.
ReplyDeleteI thought this was a great article. Its so interesting that there are so many diseases out there that we never know about. I have never heard of EB and I think it is a terrible disease that I think should be more well-known because of its terrible symptoms. This article was very interesting and I'm glad I got to learn about this disease.
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