
Imagine this. You are a mother and you just gave birth to your second son. He is beautiful and everything you could ask for in a child. Then your world comes crashing down around you. There is something wrong with your beautiful baby. The doctors tell you that he has SMA, or Spinal Muscular Atrophy. You are scared to death, because you have never heard of SMA, let alone ever knew someone who had been diagnosed. Now your wonderful son has this mysterious condition. You frantically hit the internet in search of answers.
This very thing happened to a dear friend of mine, Nathalie. Her second son Jeremiah was born July 18, 2010. In October of the very same year, Jeremiah was diagnosed with SMA. What is SMA, you ask?
SMA is a rare, inherited disease characterized by muscle atrophy and loss of motor function, caused by the absence of or defect in the Survival Motor Neuron 1 (SMN1) gene. The SMN1 gene encodes for survival of motor neuron (SMN) protein. This protein is critical to the survival and health of α-motor neurons, which are nerve cells in the spinal cord responsible for muscle contraction. As the motor neurons become unhealthy due to the reduced SMN levels, muscles weaken and become atrophic. For more information about SMA, please click here for a more complete introductory discussion about Spinal Muscular Atrophy.
-from Spinal Muscular Atrohy Foundation
Symptoms of SMA include "progressive loss of muscle control and movement and increasing weakness due to the loss of motor neurons in the spinal cord." According to the Spinal Muscular Atrophy Foundation the muscles closest to the center of the body (i.e. those in the trunk and neck) are more severely affected than those furthest from the center of the body (i.e. those in the hands and feet). The normal growth and development of a person can also place addition demands on the already weakened muscles. Even in the most moderate form, SMA can limit function and mobility. There is also a wide range of severity of SMA. It varies in age of onset, however most patients start to develop symptoms during infancy or as toddlers. People with SMA often "develop bone and/or spinal deformities" according to the SMA Foundation. They also warn that respiratory illnesses may be more common and can be very severe for those living with SMA.
Now that I have told you about SMA, let's go back to Jeremiah and his wonderful family who cared for him deeply every day of his short little life. His mother, whom I briefly attended high school with when our fathers were both stationed in Germany, is a wonderful doting mother and wife. Her husband serves our country in the military, and their oldest son Noah is the most adorable little boy. They all loved Jeremiah deeply and did everything they could to make his life, no matter how short, one that would be remembered. Nathalie's one request when all of this was going on, was to spread the word of SMA. She wanted to get the word out to people who may not know what it is. Even in her time of crisis she was thinking of other families. For Nathalie and her entire family, all of those out there who love Jeremiah, I write this for you. I am also going to add any family who has ever been rocked by a diagnosis of SMA. Just know that you are not alone. There are other people out thttp://www.blogger.com/img/blank.gifhere who are going through or who have been through the same thing as you. Keep your heads up, pray, and live the best way you can. There are others like me that are here for you. Do not hesitate to ask!

In Memory of Jeremiah 07/18/2010 - 11/01/2010
Please like his page on Facebook: Jeremiah's Footprints
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