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Hunter has Opsoclonus Myoclonus Syndrome (http://www.omsusa.org/pranzatelli-Brochure1.htm
) or Dancing Eyes Dancing Feet Syndrome. These are a good set of videos as to how Hunter is right now. It documents the truncal ataxia, the walking, the rages, fine and gross motor skills. It is INCREDIBLY rare. There is not enough known about it to have a cure, so this is something he will have for the rest of his life.
3 Ways OMS Can Occur
- It could have been caused by a neuroblastoma (cancer) that his body recognized. Once it is recognized as being "foreign", the body produces B-cells that violently attack the cancer so that it is reabsorbed in the body. Those "aggressive" B-cells do not just die off after the cancer is reabsorbed...it begins attacking the brain at the cerebellum (the part of the brain that controls your body movement) and the frontal lobe (which controls your moods).
- Idiopathic (meaning it came from a virus)
- It is a precursor to neuroblastoma (cancer) that can show up with the next few years.