MRI Results

Wednesday, April 1, 2009
So.....I was trying to get this done last night but I just could not bring myself to sit down and face the facts. Kennedy's MRI results came back and they were devastating. We were told that my favorite person in the entire world has a Neurodegenerative Disease. Dr. Michelson showed my mom and I images of Kennedy's MRI so we could have a visual aid. The pictures he revealed left us speechless - Kennedy's brain was not growing and her myelin (white matter) was disappearing. At this point she almost has no more myelin left. The pictures showed a lot of spinal fluid in her brain. Meaning that as her head continues to grow her brain is not and spinal fluid is filling up the empty space. In addition, some other parts of Kennedy's brain (the basil ganglia & thalamus, which are two important structures) were showing signs of atrophy or shrinking. In addition, Dr. Michelson showed us that Kennedy's Cerebellum has not continued to shrink, however, he did show us how significantly small it is. It is about 1/6th the size it should be.

We were told that Kennedy could have one of any 10 very rare genetic diseases. Dr. Michelson said that he thought it was a Luekodystrophy - WHAT, that word again. I thought we already traveled down this road and closed that door - apparently not. I explained to Dr. Michelson that Kennedy was already tested for three different kinds of Luekodystrophies (Metachromatic, Adrenal, & Krabbes) and they all came back negative. Dr. Michelson left us in the room while he went and dug through Kennedy's extensive medical file. After about fifteen minutes Dr. Michelson was back and asked me if we ever were tested for "X" disease (can't remember name) I told him no. He proceeded to tell us that Kennedy was never actually tested for Krabbes Disease. Loma Linda filled out the lab slip wrong and the blood was tested for the wrong disease - not Krabbes.

Dr. Michelson said that it all made sense. He was pretty sure sounding about Kennedy having Krabbes Disease. He said her MRI/MRS images resemble somebody who has a luekodystrophy. In addition, the EMG she had done @ Loma Linda also showed that she had Peripheral Nervemyopathy which also is a syptom/sign of having a Leukodystrophy. We were sent over to the lab to get blood drawn for a test which I already thought was done and produced a negative result.

I wish I could go back and make yesterday disappear! I wish I had a time machine! I knew Kennedy was sick but I guess I just hoped she would live on forever with us and we would adjust our lives to meet her handicap. We would always have a "special" family but I always thought she would be a part of it. I never in my wildest dreams thought I would be sitting in a doctors office being told my child has a terminal illness. I am so sad that Kennedy will be taken from me by a disease - way before her time. It saddens me that I will never get to hear her say my name or watch her take her first steps. I don't know what I am supposed to do with out her. Now we wait and see (three weeks to be exact).....See what God has in store for my darling Kennedy.