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Nathan’s Fight

10th December 2014

Nathan was born May 18, 1999. Perfectly normal, perfectly healthy, just perfect. In May of 2005, we noticed that Nathan had started urinating in his pants again. We had not had this problem for a couple of years. I was going through a divorce at the time, and thought that maybe he was acting out a little. During the summer, I noticed I had to repeat myself several times before he would respond. Again, I thought he was just testing his bounderies. I also noticed that his right eye had started to gaze outward. I took him to the doctor at the end of summer, and she referred us to an opthomologist. At that appointment, she told us that Nathan was legally blind in the right eye, and that she did not think it was a coincidence that Nathan had some hearing problems. We went for a CAT scan that day. The next day an MRI was done and confirmed the ALD diagnosis. This was October 1, 2005. On October 7th, we went to Cincinnati Children’s Hospital where all of the testing was done. He was placed on the Bone Marrow Transplant registry. On the 13th of October, we had gotten the news that they found a perfect match for Nathan. It was set. On November 16th, Nathan had a bone marrow transplant. About 1 week after transplant, he lost all of his vision, all of his hearing, stopped eating, stopped talking, stopped walking. He had mucousitis for 8 weeks. One of the worst cases they had seen. He got a feeding tube in January. He was discharged from the hospital on Febuary 21, 2006. 98 days post transplant. We had gotten him to the point he would walk with assistance. He still couldnt see or hear anything. He would interact some with us, smile, and even laugh sometimes. Then his ALD started progessing even further. In March, I kept telling them that something was wrong. I wanted to just take him home. Stop the madness. But my fiance said that we had come this far, just give him a chance. On April 19, 2006, Nathan went home to be with the Lord. He was finally healed. He was finally rid of this very horrific disease. He can walk, he can talk, he can see, he can hear. I am at peace, knowing that I did everything I could do. I know that I will see him again.

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