November 14th

This day in 2017 we were the 9th patient to be part of a clinical trial at the National Institute of Health. The NIH is just a mysterious place. I leave it at that because the things that are discovered there or treated or just the vibe in general is crazy. When we first were diagnosed we were informed that the scientist there were in the works of beginning a clinical trial that would potentially help halt the progression of the disease. When we initially were given our diagnosis we were told that not only was this the first time his provider had seen a patient with this disease but it was terminal there was nothing available that would stop or fix the disease. So when we were told about this possible cure, we were there contacting who we needed to contact to figure out how we became part of the trial. I wont go into details of the trial and what it all consisted of because to be honest with you all I don't know if I can really share it all. Any who after waiting about 2 years we were chosen to be the 9th patient to receive the injection we spent about 2 months living at the Children's Inn which was in the hospital grounds and everyday had to see many many doctors. We knew that this wasn't a for sure thing and we knew that they didn't promise to cure us but I had so much hope. I prayed so so hard for this to cure my child. It has been 3 years and yes we are thankful that we were chosen to be part of the trial but it didn't work for us. It didn't do what I prayed for it to do but thats okay. At one point after asking why for so long you learn to be okay with things. We accepted our future and now just try to always make the best of it.

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