Saving Jesse - A Diary of Rasmussen's Syndrome

Nicky Armstrong suffered alongside her son, Jesse, as he was forced to endure a disease that she came to think of as a thief - a thief that came in silence and secrecy to steal even-larger pieces of her child's life and mind. Saving Jesse is the story of that thief's journey through their lives. It is about a mother's struggle to understand what was happening to her beloved once healthy son. It's about her fears and failures, frequent temptations to despair and ultimate triumph as family and community conspired to "cheat the thief."

Saving Jesse is based on a diary Nicky started when she was asked by physicians to record the frequency and duration of Jesse's seizures. It became much more than a simple log. Told at the pace of a well plotted novel, Saving Jesse is a story that will touch every parent's heart. It is a story of hope and triumph in the face of overwhelming odds. It is a story of faith. It is a story of ordinary people in extraordinary circumstances. It is, finally, a story of love - as all such stories must be.

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.
October 11, 1999