The background...

This all started when I learned about the story of Sophia.

I have been a member of a website called Long Island Families for several years now. I would say I have been a member there since 2006, after I got married.  The main reason I was using the site was to utilize the discussion boards.  I was pregnant with my son and there was a pregnancy board where women would discuss things such as what their early pregnancy symptoms were or when was the first time you felt your baby move.  It was a great place to go to ask questions from women who were going through the exact same thing as you at the exact same time.  It was also nice to have the 'been there, done that' moms chiming in with their opinions and experiences.  From the pregnancy board, I graduated to the parenting board once our son was born.  Now I could ask things like "when did your baby finally start sleeping through the night" or "how many times does your infant poop"!  As a new mom who had no idea what I was doing, LIF was a wonderful resource to me.

I don't remember exactly when I first learned about Sophia.  I know that she will be 3 in February, so it must have been sometime in 2008.  I remember how open her mom was in telling us about her diagnosis.  Sophia, this beautiful little baby girl, was diagnosed with SMA.  Spinal Muscular Atrophy.  Just like most of the the other moms on our little online community, I had never heard of SMA.  Of course from there I went straight to Google to learn more.  What I learned is that SMA is a genetic disorder.  It is also the leading genetic killer of children under the age of 2.  It is something that robs these children of the ability to roll over, to sit up, to walk, run, and even breathe.  My understanding is that they are missing a gene that helps in the development of muscles.  With nothing to develop new muscles, the ones they are born with begin to atrophy and they lose the ability to move.  I immediately looked at my own son and vowed to never take a single breath of his for granted.

Time went on and Sophia's mom continued to inform and educate us about how Sophia was doing and that they had started a foundation to raise money for SMA research.  Their foundation is called Sophia's Cure Foundation and let me tell you, these wonderful parents are working HARD to raise awareness and raise money for a cure!