This is Raul and he is fighting. Raul was born in Romania in 2009 with a severe form of Epidermolysis Bullosa, the same disorder that took the life of his twin sister just after a few short weeks.
The first several months of his life were spent int eh hospital until he was transferred to Tutova Clinic where he would meet the woman that would forever change his life, the woman that would stop at nothing to try to save him and give him a better quality of life.
Caroline Ruhl, at the age of only 19 fell in love with Raul. It did not take long before she had made the necessary arrangements to obtain a medical visa for Raul and become his guardian. She knew that EB was a terrible disorder and that if he remained where he was, he would never survive.
I had the opportunity to meet Caroline and Raul this summer and it was nothing short of inspiring to watch her and Raul as they interacted with one another. You would never know that this was not her child. The love between them is so beautiful. You can see it when they look at each other…there is most certainly a very special bond, there is no doubt. This is one of the reasons why Caroline fights so hard…to her Raul is her son.
Caroline is desperately trying to get Raul treatment that could potentially save his life and make it substantially better. In order to do this, she is required to have DNA testing done to determine the exact mutation that Raul suffers from. This testing is very expensive, especially for a 21 year old single parent who must also cover the staggering costs of his daily care.
Caroline has been given an amazing opportunity to help make this happen. The lab responsible for this testing, GeneDX, has offered to provide her with a substantial discount. This testing would provide vital information that would allow a better understanding of Raul’s EB and allow him to be enrolled in the clinical trial that is being conducted by Dr. Jakub Tolar at the University of Minnesota. Raul’s participation in this trial will not only help him, but will also make a difference in the life of other EB suffers.
Please consider helping Caroline by making a donation to Help Us Help Raul. You contribution will make a difference to not one, but many. You can follow Raul’s story at My Romanian Butterfly and just take a look at this video to get a glimpse into Raul’s first few years…you will FALL IN LOVE!