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A spoonful of sugar for NEMO -- Care to save a childs life?

By Keith Roman  Posted by Mike Gracia (about the submitter)     Permalink       (Page 1 of 1 pages)
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I was born in 1953. This qualifies me as the ultimate baby boomer as I was born dead center of the post WWII to 1963 surge in US and UK population. Being born at this particular time in history gave me a firsthand view of many events. Some of these were joyous, some were not. I remember my friend Jacques who developed Polio as a child. Fortunately he was not one of the thousands of children confined to live in a terrifying breathing assistance contraption, the iron lung. Jacques was merely confined to a wheel chair for 15 years until through a combination of therapy and determination he was able to walk.

I remember being in the fourth grade and being administered a tiny pink sugar cube. At school assembly we were all told how chewing and swallowing this sugar cube would keep us safe from ever developing the dreaded disease polio. It was amazing. This was the first use of the oral vaccine for polio.  Albert Sabin developed this form of the vaccine and I can tell you, he was a hero of mine and every other parent and child alive in those years. He remains so to this day.

Today for the first time I heard about a children's disease called NEMO. It stands for Nuclear Factor Kappa B Essential Modulator.  Yes, that is pretty complicated. Let's make it simple to understand. Diseases such as this are today what polio was when I was a child. And, just as with polio they need a cure. There are plenty of good people similar to the likes of Albert Sabin working hard on this. The cure hasn't happened yet, but as with so much research on disease, a great deal of hope lies in the area of stem cell research.

I cannot tell you that the cure for NEMO is at hand. I can tell you that at present the best treatment for children with NEMO (and many other critical diseases) is a bone marrow stem cell transplant from a very closely matched donor. The more potential donors that are in the database, the many more lives of children can be saved. Getting into the database is easy; you fill out a few forms and swab a few q-tips around the inside of your cheek. The whole process is done though the mail.

Here is the link to follow to do so. http://www.marrow.org/JOIN/index.html?src=Join

I can't help but wonder where myself and so many kids who were my age might be had a vaccine for polio not been developed. I can't help but wonder where children with NEMO and other immune system diseases will be, when thanks to research and donations, they have their own little pink sugar cube to swallow.

 

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