Thursday, August 20, 2015

SMA Awareness Month

Louisa, 24.12.11-19.05.12
Many of you may not know that August is SMA Awareness Month. In fact, many of you might not even know what SMA is. I certainly didn't; until I lost a niece to it. Louisa passed away at the tender age of 5 months, and is very much loved and missed by her family.

SMA stands for Spinal Muscular Atrophy, a disease that is the number one genetic cause of death for infants. It robs people of physical strength by affecting the motor nerve cells in the spinal cord and leads to progressive muscle wasting. While it does not affect the minds of those who have this disease, it hinders the ability to do many everyday things; eating, breathing, walking, speaking and swallowing. 1 in 50 Americans are carriers of the defective gene that is responsible for SMA. If two carriers have children, each child has a 1 in 4 chance of being affected.

While there is no treatment or cure available for SMA, this is one of the very important reasons for raising awareness about the disease.

More than the obvious suffering that infants go through because of SMA, it's the families who suffer. How can anyone adequately put into words what it's like to lose a child? And yet, that's a reality that parents of babies with SMA have to deal with on a very regular basis. They know that the time they have with their angels is limited, and they have to live a life cherishing each and every moment in ways that none of us can possibly imagine.

What can we do about SMA, you may ask? There are organisations doing wonderful jobs of raising awareness and funds for SMA research, like http://www.curesma.org/ and https://thegsf.org/
There are many ways to get involved, from donating, to hosting events, to volunteering at events, and many more. Hopefully, a cure will be found soon!

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