Saving Jesse - A Diary of Rasmussen's Syndrome

Nicky Armstrong's young son, Jesse, had a hemispherectomy (removal of one half of his brain) after a prolonged and disruptive seizure disorder caused by Rasmussen's Syndrome. For families considering neurosurgery, this family's story should be on the "consider reading" list. Yes, it is stressful to read about rudeness and contriteness encountered in the medical field. And yes, reading about a child's battered body from both seizures and drugs is not pleasant. But between these pages lie the reality of a disease and the opposing sides of an impossible decision. While Rasmussen's appears to be a viral, contracted disease, and is in that regard dissimilar from other disorders effecting the brain, the ordeals with medial professionals, medical institutions, medications, research, and the meticulous weighing of conclusions are similar. How one family coped, and at times did not cope, is both reassuring and frightening. Until we live in an ideal world where children are spared the pain and cruelty of diseases like Rasmussen's, we can be appreciative that families such as the Armstrongs have the courage that comes from deeply loving a child to share their story simply and honestly.