Maybe..

Last year there were several times that I thought, maybe Jake had to get this sick to finally get the answers we need. We didn’t get the answers until a year later, and because it’s such a rare condition, Jake may be paving the way for future patients. It will take time to know if this is the answer. More than a year ago Dr. S. threw out the idea of a bone marrow transplant.  He was the neurologist, but he probably spent more time thinking about how to cure our kid than all the others combined. Jake was certainly interesting and rare, and many students were brought through for the experience. There wasn’t a lot of research out there, maybe now there will be more. Dr. S. read everything he could and drew upon his own experiences, but things were just theories and unknowns.  But he threw it out there. Maybe just to us. Maybe to other doctors. A bone marrow transplant could be curative. If we could cure the NK cell deficiency. .. I also read medical journal articles, and a name popped up- a doctor from Baylor who was a leader in NK cell deficiencies.  I couldn’t load Jake onto a plane, so I figured out his email address.  I heard back the next day. I’m sorry for what your son is going through. His case is very interesting, and I would like to keep updated on his progress. Anything you can share would be appreciated.  And yes, a bone marrow transplant could be curative… the problem is that you don’t just do a stem cell/bone marrow transplant willy nilly. Do the benefits outweigh the risks?  Currently there are 200 conditions treatable by these transplants.  There is a little girl with a rare type of anemia that causes physical abnormalities.  She could be cured with a BMT. But she will continue to endure the disease until it becomes bad enough that there isn’t another choice. Last year Jake wouldn’t have been approved for a transplant…

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