Wednesday, June 23, 2010

With the Reality

Today I got an e-mail from the physician who was ostensibly in charge of Daniel's autopsy. Yes, eighteen months after his passing, there is still work which is going on with the samples which were taken. Our pathologist is moving on and leaving this major medical center and wanted us to know who directly to contact at the other US center which is now entrusted with continuing to do DNA testing. They are looking for genetic causes for arrhythmia, because in actuality,this is the best guess we have. The good news is that they do, in fact, have a viable DNA sample. The bad news is that there are, in my understanding, about two places in the world capable of doing such sophisticating testing.In fact, with worldwide budget cuts in research, this center may presently be the only one. They believe that it will be an additional eighteen months before they can provide definitive answers as to whether Daniel actually carried one of the known genetic markers for Long QT syndrome, or another related or similar genetic arrhythmic disorder.
Of course,even though we live with this every moment of every day, when we hear about something concerning Daniel's case, it is upsetting. We are grateful to everyone who has worked so hard to find an answer for us. One of our other children will be having a cardiac mapping and ablation this year, and as much information on Daniel's case as possible, would be helpful to the electrophysiology cardiologists doing the procedure.
I still cannot fathom that my brilliant boy, who was looking at colleges at 12 1/2, went to University of Virginia as a cadaver and not as a student. Sometimes the horror is no different than it was,the week it happened.
I try really hard to understand that life is the schoolyard, and not eternity, and I do have a strong faith in God. However, sometimes we just sit here on Earth with the reality.

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