WHEN THE LIGHTS GO OUT

When the light goes out, how great is the darkness!

Priya is the light of my life! She lights up my world like no one and nothing else can.  She makes every day brighter by just being in it.  I cannot imagine going a day without seeing her beautiful, bright eyes and sweet, happy smile!  This week, one of my Beckwith-Wiedemann families lost their little light.  He was just two months shy of his second birthday.   My heart hurts so much for them.  

It is not uncommon for kids with BWS to need trachs to assist with breathing through their airways.  Eventually they are able to be weaned from their trachs, but it can take some time.  When Priya was in the NICU, there was a certain point where we thought she might need airway assistance by trach, but fortunately that wasn't the case for her.  Well, this little boy did need one, and he pulled it out while sleeping this past week and and never woke up.  

Ouch.  Heartache.