Wednesday, November 9, 2016


In general I try not to take things personally, however when it comes to Sonzee and spreading awareness of her story, CDKL5, and epilepsy in general it tends to be a different story.  I am much more sensitive when people make comments without thinking, it's not that I want to crawl up into a ball and cry, but sometimes the words cut a little deeper than I would like.  I also try to not take offense to people not sharing or liking Facebook posts.  I can appreciate that Facebook and social media in general can become overwhelming and people do not like their news feeds being inundated with random children's "sad life stories".  However, I cannot lie and say it does not make me super peeved and annoyed when I see people have hidden or unliked a "Sonya's Story" post.  

I know everyone has their soapbox, their personal agenda, and personal struggles, but what I want to ask is what happens when it is THEIR child, THEIR best friend’s child, or THEIR family member who becomes a victim to epilepsy or a rare genetic disorder?  How would YOU feel when an important purpose that YOU stand for, that YOU want others to care about is ignored?  Sonya's Story and ALL of the Facebook teams that represent a fight for a cure, an illness, and/or a cause, they are about REAL PEOPLE!  They are children, they are siblings, they are moms and dads, and they are people worth more than just hitting "ignore post".

As Sonzee gets older, she will not be as cute as she is or was when she was a brand new baby who people oogled and ogled over.  As time goes by people won't look at her and feel as driven to help find a cure or support the cause, but right now I really don't understand how people can hide her cute pictures (okay, maybe I am biased?)  and not want to help find a cure or spread awareness for CDKL5.  I wish Facebook told me who was hiding posts and unliking her Facebook page so I could defriend them.  Maybe I am being a little too sensitive about the issue, but can I tell you how many of my Facebook friends Jamberry, Mary Kay, Luloroe, Arbonne, Rodan & Fields, Scentsy (I can go on) groups I belong to?  What does it hurt to follow a page?  I don't ask for people to like a post, nor does anyone have to share it, but I wish people would follow her story because they won’t ever know when it might help someone they know and love in the future.

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