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Sirena Wiley hasn't added a story.
As most of you know. Ben Jr was born with Junctional Epidermolysis Bullosa, the rarest form of EB, on Oct 27, 2011. Doctors told us that he would not live to be one year old, he is now 4 years old. Preparing for pre school in 6 months. He is the sweetest soul that you can or will ever meet.
We live in Arcadia, Florida. There are no doctors here fimiliar with EB or any here that are even interested in learning EB other then his primary doctor. His GI doctor, surgeon, dermetoligist, and dentist are all out of town. Therefore, we are always referred to doctors that are fimilar with EB so that Ben Jr can get the best care possible for his condition.
We have multiple trips coming up in these next few weeks. All are 2-4 hours away. This means time off work for dad and mom. Along with gas, food, and even over night stays sometimes. Over night stays are often expensive due to the fact that most of his doctors are in Orlando, Gainesville, Tampa, and Miami, all some of the biggest cities in Florida. With Ben Jr's open wounds and frequent infections, staying at the Ronald McDonld houses are usually out of the question. But not always!
Being a family of 5 we understand hardships and not being able to do certain things. One thing that is a must, is taking Ben Jr to his appointments. With your support and help we can do just that and not have to worry about money issues or time off work. Please help us by sharing and talking to anyone that you know that may help or donate! Thanks and God Bless.
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