Skip to main content

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!

Labels

Labels:

Comments

Post a Comment

Popular posts from this blog

Five years of The Kenyan Nomad: Looking back

How time does fly! I can't believe that my little blog is five - what a journey it has been! I thought it would be fun to look back on a few posts I've done over the years. -------------------------------------------------------------------------------------------------------------------------- My first post  was an attempt to restart a blog that I had started writing four years ago - back then, it was more of an extended, and public mailing list. This was a week after I turned 20, and I think the 'new decade' brought me some inspiration to write that I'm still going on! -------------------------------------------------------------------------------------------------------------------------- A few months later, I shared some pictures from a trip to the Masai Mara. -------------------------------------------------------------------------------------------------------------------------- During the spring semester that year, I did a few posts from a series I had posted...
Post a Comment
Read more

Restaurant Review: Christmas at the Arbor

Happy holidays, everyone! As I write this, I'm sitting in the U.S., having travelled here to spend time with family (and see friends if I get lucky). Saturday the 17th of December, however, found me in a food coma after a delicious Christmas meal with Darshani (of Cupcakes to Curry) at the Arbor in Lavington, Nairobi. The Arbor has a very laid-back, chic outdoor ambiance, well-suited to Saturday brunch or a dinner out with friends. Darshani and I were there to do a review for a podcast, and thus ended up having a multi-course meal at 10 am on a Saturday morning (accompanied by various cocktails, of course, much to the envy of the other diners)! The weather was perfect December weather - warm and sunny, forbidding any sort of indoor seating at all. For my non-Southern hemisphere readers, you'll just have to visit Kenya to know what I mean when I say 'perfect December weather' and 'warm' in the same sentence. It was started about two years ago by Shamini, original...
Post a Comment
Read more

10 Reasons to Visit South Africa

Have you always dreamed of visiting South Africa? I just got back from a two week vacation spent in Kruger National Park and Cape Town and let me tell you, it was AMAZING! I was so fascinated by the seemingly endless beauty, culture, and adventures that South Africa had to offer. So, if a trip to South Africa is not yet on your bucket list, here are 10 reasons why you should go: SAFARI #ENOUGHSAID Going on safari is an experience of a lifetime that you simply cannot miss out on! When else will you have the chance to get up close and personal with all kinds of amazing wildlife?? Leopards, rhinos, hippos, elephants, lions, the list goes on�South Africa is arguably the best place on the planet to go on safari and I saw all of the Big 5 within the first couple of days. FRIENDLY, HAPPY, BEAUTIFUL PEOPLE Whether having a drink with safari rangers or striking up a conversation with locals on the train, one thing is certain: the people here are wonderful! Maybe it�s the great weather, deliciou...
Post a Comment
Read more