Being diagnosed with ANE

The first one occurred when she was just 11 months old. Initially admitted to hospital with uncontrollable temperatures and lethargy, she then developed seizures, a rash and cold extremities. The diagnosis wasn’t clear but after three days, she started recovering and returned home. Apart from having to relearn to crawl, within a month there were no signs that she had been ill at all.

Then, when she was 13, Kate experienced her second and much more severe ANE episode. Her initial flu-like symptoms worsened and became so unusual that she was admitted to hospital where she presented with confusion, Bell’s palsy, slurred speech and unsteadiness. She was having minor seizures, vomiting and one pupil was much larger than the other. An MRI showed she had lesions all over her brain. The Neurologist diagnosed it as ANE.

Kate was unable to use her hands and needed support to walk. She spoke like she was intoxicated, was hallucinating and her emotions, including inhibitions, were haywire. Understandably, this was an extremely scary and overwhelming time for the family.

“Our time in hospital was a blur. There were so many specialists coming in and out of her room and we didn’t understand the medical terms or who we needed to speak to about what. There was so much paperwork and so much information to take in. We were in shock,” her mother, Kim, recounted.

Kate's recovery and return home

After intensive therapy with the brain rehabilitation team, Kate recovered enough to return home. But the disease has left its mark. Kate suffers chronic headaches, has some cognitive and fine motor control issues, and certain social situations overwhelm her.

“We are eternally grateful that Kate pulled through. We received amazing support from our rehab team that supported us practically and emotionally through the hospital experience and the return home. Kate’s psychologist, speech therapist, occupational therapist and social worker have been fantastic. Kate was determined to return to school. This was inspiring but it also brought challenges because her teachers weren’t aware of the effects of a brain injury. We’ve had to learn many new strategies to help her deal with learning and the school environment, fatigue and memory difficulties.”

Displaying amazing tenacity, Kate has learned to accept her brain injury. She now openly shares her story with her school peers and teachers to help raise awareness of the many different types and outcomes of brain injury.

People meeting Kate today would never know that she has a brain injury. Her family has connected with 100 families all over the world who have been dealing with ANE and have found the shared support of this online community invaluable.