ANE and Relapse – The Brutal Story

This was ANE International’s co-founder, Rachel Shilletto’s post in 2013:

“In great need of prayers right now, I’m hoping for Mother’s paranoia but we are at Guelph General and waiting for doc to see Arden.”

This was the second most horrific night of my life, sitting on the verge of falling apart and denial, I prayed and prayed that I was insane. That I was being paranoid thinking that my daughter was going to get have another ANE episode. We had been told in 2009 that the likely hood of another episode was really minuscule.  But here, we were in the middle of the night, praying to God, that we were being overly sensitive.  It would take us 38 hours of arguing with the on call Pediatrician to get the care that our daughter deserved and needed. I did not sleep in those 38 hours. I cried, cried and tried to keep myself busy wanting to deny that we were going through this AGAIN.

Now, every time that either child as a fever, I sleep with my body fully aware ready to jump out of bed if they need me or if they breath funny.  I spend all their feverish time in this haze trying to act normal and not fall apart. Fighting unwanted images that sends my heart racing and my temples hurting. I wake up with eyes reddened by unshed tears and my throat raw from emotions that I am battling. It took a burnout to even become mindful enough to realize the impact that this persistent trauma is causing me.  Now I need to find a way that will help me deal with this reaction.  There’s a 25% change that at every Influenza B episode, that she can relapse. I need to be prepared for this but I also need to deal with trauma that is so emotionally & physically taxing so I can heal my soul, body and mind.

This date as well as March 9th, 2009 will always stay with me as this is the death of a different version of my daughter.  A version that I mourn and that now lives in my heart as I embrace my daughter in this other beautiful and empathetic version of herself.

Find more family stories at: http://aneinternational.org/ane/stories/

#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu

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