Saving Jesse - A Diary of Rasmussen's Syndrome

by Nicky Armstrong

Rasmussen's Syndrome is a disease that attacks the most innocent among our children. Its cause and cure are unknown. Its preferred victims are bright, healthy children between the ages of 1-10 yrs. old. It begins with a seizure, which become progressively more frequent and severe. The child deteriorates mentally, emotionally and physically as the disease takes hold. Its social and psychological effects are even more devastating. It continues its destruction until it has destroyed one hemisphere of the brain. The only treatment is hemispherectomy - removal of 1/2 the brain, in a desperate hope to stop the destruction. 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.

Paperback

Published November 15, 1996

Reviews

[Kristen · Rating 4 out of 5]

What can I say about this book? Well, first off I just picked up this book because the title seemed interesting and right up my alley. When I began reading, it took me by surprise that the origin of this book was not only in Canada but in Saskatchewan- vanscoy to be precise- just 15 minutes from Saskatoon, where I live. This was exciting and easier to visualize everything the author was talking about.
The story was about a child with a disease called Rasmussan's syndrome and a family's struggle with their son's diagnosis. It tells us what Rasmussan's syndrome is. It goes into the struggle of getting diagnosed, in-depth about the son's chronic and courageous battle with on-going symptoms, such as the types of seizures he had and the problems that followed the seizures. It also highlighted how mothers are mother bears and will do anything to help their child and be an advocate for them. this is an incredible story of how far a family can fight to give their child the best possible quality of life after a disease life-threatening, such as Rasmussen's Syndrome, intervenes.

[Ashley Loehndorf · Rating 4 out of 5]

This book had me captivated, angry and grief stricken for this family. What a heart wrenching journey. This story, like many, where people go unheard, dismissed and are left to carry the weight of their health issues solely on their own are still so relevant today unfortunately. Please advocate for yourself!!

I am not sure what his life is currently like, but I pray that him and his family have found solace in knowing they did everything they could. You’re a warrior Nicky. My heart goes to you.

[Mike Madziar · Rating 4 out of 5]

Bold.

I like to think that I could be as strong as the parent that wrote this book about her experiences dealing with her son's severe illness. I do not think I could be that forthright about my emotions and thoughts, even years afterwards. Compared to the limited amount of non-fiction I have read, this book feels the most authentic and personal. I am glad I read this before we had our first: all the little things my child does that could get a parent worried is minutiae to me.