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Wednesday, February 17, 2010

Who We're Doing This For: Part 2

This is Sam. Here is an excerpt from her Caringbridge site:
Samantha was born with a genetic condition called Epidermolysis Bullosa. She has a Dominate Recessive subtype. RDEB is usually lethal before the age of 20. Sam has endured a life of pain that goes beyond words for all of her 14 years of life. Just when we had no hope at all for relief or a chance at anything close to a normal pain free life, along came "The Bone Marrow Stem Cell Transplant". We followed this treatment for 2 years. We absorbed any information we could get. first consulted in New York with Dr. Mitchel Cairo. Then we consulted Dr. Michael Nieder at All Children's Hospital in St.Petersburg Florida, where we live. We consulted with Dr.Nieder to help educate our family on transplant, and to also give us his professional evaluation on Samantha. We asked him directly to tell us if he thought she would be a good candidate. Samantha's 8 year old sister Chloe is a "10 out of 10" silbling donor match. This is HUGE for this study. We considered this to be our first sign from God that this was a "go".Then we went to Minnesota with Dr. John Wagner, which is where decided we would transplant. Samantha is going to be patient #7. Lucky 7!

Since that was written, Sam has undergone her transplant. She's currently at Day +173. You can visit her site here to read more about her long and arduous journey. Oh, and while you're there, you may want to know... it is quite possible that she may have had a birthday this week. ;)

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