Devon VanNort Go home Elsa, you froze D

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement as we work towards getting D unfrozen.


On February 14th, 2017, D (age 12) started showing signs of what we now know was a large brain stem stroke.  The original thought was one of his regular seizures but with bad after effects.  It was in fact a precursor to the stroke.  On march 3rd, 2017, he was having a hard time at school with walking and breathing, so we rushed him to the ER where they put in a breathing tube and transferred us to Mclane Childrens in temple.  They took him off the propofol the next day to try to take out the breathing tube, and over the next two days we would come to realize that while it appeared he was awake by his eye movements, his body wasn't cooperating.  It was finally shown on an MRI/MRA that he'd had the stroke.  That's the very short version.  We are calling his stroke Elsa (from his favorite movie Frozen), because she froze him.

The stroke caused Locked In Syndrome, so he is basically paralyzed aside from his eyes.  He can open them, and he tries hard to blink multiple times if you ask him.  The doctors don't understand why he had this type so young with no previous clot issues.  They are now doing extensive testing to keep it from happening again.  In the meantime, his prognosis for ever being somewhat normal again is not good.    They really can't tell us if he'll regain any movement so this will be a day by day process.