Rare Disease Report: 4-Year-Old Girl Contracts Rare Brain Disease After Tonsil Surgery


By Andrew Black at Rare Disease Report
 
She went in to have her tonsil’s removed, she came back with a rare brain disease known as acute necrotizing encephalopathy. From contracting the brain disease, Tiaré Johnston has suffered immense brain damage and is currently receiving treatment trying to recover. 
 
Everything seemed to check out fine after a routine tonsil surgery. However, days later, Tiaré’s parents found her unresponsive in a pool of her own vomit. She was unable to speak and was immediately rushed to the emergency room. 
 
At the hospital her CT scan showed that her brain was swelling, putting pressure against her skull.
Doctors diagnosed her with acute necrotizing encephalopathy and noticed the disease had brought damage to her brain along with her liver and kidneys. 
 
While being able to fight through the disease, Tiaré was eventually discharged from the hospital, at a price. She left not being able to walk or talk properly. 
 
Neurologists have told her parents if she survives she is most likely to be severely disabled. Right now, Tiaré has been using a walking frame and initiates forward steps during each of her attempts on this walker.
 
They are still trying to figure out she might have contracted the disease. At this time, there is no evidence that it was linked to the surgery.
 
 

Filed Under: Community Events, Insights, Patient Stories

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Global Genes Comments

  1. If you have this article posted here , how come ANE is not listed on your rare disease list?

    • Hi Rachel,

      Our Rare list is in flux. With the onset of affordable genetic testing we are being bombarded with new conditions daily. We’re having some technical issues with our list page and haven’t been able to add all of these new conditions. But rest assured we are working on the problem and hope to get the revised list up and running soon!

      Best,
      Ilana
      Managing Editor

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