Tuesday, July 12, 2016

Shannon's gift

So what happened to Shannon during that routine procedure that caused her death?  As in many cases, it is hard to say without a doubt.  Mitochondrial diseases are complex disorders that can have serious effects on many organs.  Even minor illnesses and procedures can be a significant cause of morbidity and mortality.  Sadly, Shannon’s health became increasingly fragile.  Like many individuals with mitochondrial diseases, her body could not tolerate even seemingly simple surgeries.  Mitochondria are in all of our cells.  They take the food we eat and turn it into energy, the energy that every cell needs to survive.  Without this energy, cells fail. Shannon had being living with her mitochondrial disorder for her entire life of 48 years.  Some mitochondrial disorders, this is a very long time. Organs become weakened and fragile.  Although I never met Shannon, I had the honor to meet Mr. Nate Bennett following her death. My hope is that our discussions would help Mr. Bennett understand the disease and understand why we lose our loved ones with mitochondrial disease prematurely. I reviewed the information that Mr. Bennett kindly provided. Shannon certainly  had  a rare mitochondrial disease called Kearnes Sayre Syndrome.  This disease is pernicious, advancing slowly and damaging many organs during a person’s life.  The eyes stop moving over time and it becomes impossible to hold the eyelids open. It becomes impossible to even look up, look down or side to side.  Almost all other organs such as heart, liver, kidney, breathing muscles, hearing, and brain are affected, slowly losing their ability to function. All this happens because the mitochondria are failing and cannot produce enough energy.  Her body was unable to handle the stress of a routine outpatient surgery, most importantly the muscles that are important for breathing.  What is routine for most people was not routine for Shannon. Today there is hope for people like Shannon with mitochondrial diseases.  Shannon represents what we need for all our patients with mitochondrial diseases, no matter which of the hundreds of types a patient has. Shannon is a force for physician education and awareness, a force for improved understanding in management and care, and a force for treatment. As I have diagnosed and managed patients for almost 30 years, I have worked on discovering gene mutations that cause mitochondrial disease. Our first understanding of these diseases allowed us to diagnose patients, but sadly offer them few treatments. My greatest excitement is that we are now studying  new treatments in our laboratory as are other scientists around the that will help children and adults with mitochondrial disease. Shannon will forever be part of the energy of discovery. With great honor and respect John Shoffner, MD Medical Neurogenetics Neurology, Biochemical Genetics, Molecular Genetics   

About Shannon’s Gift:  In his memoir, Shannon’s Gift, Nate Bennett shares the blog he maintained to work though the sudden loss of his wife due to complications of mitochondrial disease. He is surprised and comforted to discover a vast virtual community of support. His blog posts – alternately poignant and of dry wit – eventually attracted tens of thousands of readers and a following from people around the world that didn’t even know Nate or his wife. The unique book gives the reader a window into the starkness of a widower’s grief in real time and a look at how social media has changed grieving in today’s world. In the end, with the support of his virtual community and the strength he was able to draw from remembering Shannon’s wishes for him, he finds love again. Shannon’s Gift is available for purchase on Amazon.com, and a portion of proceeds from books sales will benefit the Foundation for Mitochondrial Medicine and research for treatments of mitochondrial disease.

From Amazon reviews:

5.0 out of 5 stars Heartbreak and hope ... story of special love, loss and thoughtful lessons that can benefit us all in so many situations, July 27, 2014
This review is from: Shannon's Gift: A Story of Love, Loss, and Recovery (Kindle Edition)
A touching story of true love and tragic loss that is filled with deep insights and raw feelings that not only are helpful to those coping with their own personal losses, but are invaluable to anyone striving to show their own love to those they hold most dear. Impossible to put down ... in a few short pages found myself questioning how I could be a better person and show my love to my own family in a way that approaches the caring shown by Shannon's husband, sons and friends.

Format: Paperback
From cover to cover, this book proclaims messages of hope, perseverance, and restoration. The bravery with which Nate shares his story is unique and rare. Highlighting the power of relationships, process of grieving, and relentless pursuit of hope, Shannon’s Gift is a story that will inspire and heal. 

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