Thursday, January 7, 2016


I am empty and I am broken.  I guess that is what happens when a child who has the same genetic disorder as yours is fighting for her life in a PICU in Texas.  It clouds your brain with a fog; it makes things "real".  It makes life hard.

I have so many feelings at this moment.  Fear.  Panic.  Defeat.  Sadness.  Shock.  It is not solely because when I blink I can see Sonzee in this situation; it is because ALL the families impacted with a child who has CDKL5 ARE A family.

We are there for one another on good days, sharing in the joys and accomplishments.  We smile with every positive achievement.  We are there for the darker days.  The days that are not so openly shared with the "outside" world.  We have an understanding that others do not.  We get it.

We are all aware that at any moment things can take a turn for the worse.  Health is not easy to maintain, hospitalization occur more than families like, and a seizure can destroy life in a blink of an eye.  

Today, right now, this one hurts the most.  I have spoken with this child's mom.  Penny "welcomed" us into this sisterhood with a lengthy email detailing every imaginable answer to any question I might have regarding therapies and life with a child who has CDKL5.  She is an advocate and amazing person.  My heart is breaking for her and for her family.  My mind is overwhelmed with a mixture of emotions.

I feel helpless and all I can do is pray for a miracle and hope to reach enough people who will do the same.  CDKL5 does not just take away the ability for our children to do daily tasks; it causes many tears, and breaks an unnecessary amount of hearts.

Please pray for Harper and her family.  Her story is shared at

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