Monday, June 1, 2015


Before July 26, 2011, Sam and I had no real life experience with a NICU.  Just 18 months earlier with our first child, we delivered in a hospital that had a level 3 NICU for the "just in case" scenario.   On that Tuesday night with uncertainty, we were quickly thrown into a new experience.  We had known throughout my pregnancy that our son had a congenital heart defect, but how severe, no one knew.  Luckily for us, his stay was brief, and he was discharged back to rooming in with me in couplet care within 12 hours.  His diagnosis, we would later learn was a bicuspid aortic valve with mild aortic stenosis.

My knowledge of the heart has definitely grown, although I still find it a bit overwhelming with all the pieces of information we receive.  Before July 26, 2011 I was unaware that a bicuspid aortic valve is the most common congenital condition of the aortic valve.  

Fast forward to this year.  On March 11, 2015, I had no idea what a seizure looked like in a one month old.  It took just 3 more days to gain that knowledge.  On Thursday, April 16, 2015, at 2pm I was blissfully unaware of CDKL5 and the cause of Sonya's seizures, and then a mere 30 minutes later, I became aware.
We see ribbons of awareness all the time, all around us.  Some of the more "popular" ones we know without hesitation.  We look at those ribbons and give pause to our own experience with the disease or person it is representing.  Then there are others we look at and we are not quite sure what those stand for or who they stand for.  I probably wouldn't be wrong if I said that for those less than popular ones, the majority of us don't run to the Internet to do a quick google search to learn more.  We may not ever learn that the infertility awareness ribbon is pink and blue, that bright yellow is for spina bfida, or that purple is for epilepsy. 

It typically takes a diagnosis and deep rooted desire for a cure to want to spread information.  It takes being at the very bottom of an unfortunate situation to reach out and try to garner interest.  It is on the shoulders of those impacted at the first degree to teach as many people who are willing to listen so they themselves can share the information.  It is our job to help raise awareness so that our ribbon color is always known.

This month is CDKL5 awareness month. Our colors are purple for epilepsy and bright green for CDKL5 itself.  Hope-love-cure is our motto.  I ask you to join me in helping spread awareness.  

No comments:

Post a Comment