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:
Heartbreak and hope ... story of special love, loss and thoughtful lessons that can benefit us all in so many situations,
By
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.
By
Pam Perkowski
on June 5, 2014
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.
No comments:
Post a Comment