The story of Kim
When you have four children with the eldest being 25 and the youngest 13, and the flu hits your family, the last thing you expect to hear is that in actual fact your daughter has a rare disease which was triggered by the influenza.
We didn’t know it at the time but acute necrotizing encephalopathy had in fact affected our youngest daughter, Kate, when she was just 11 months old. After having uncontrollable seizures, she spent seven days in hospital and was released with a diagnosis of meningoencephalitis.
Twelve years later, Kate came home from school complaining that she had a headache and sore throat. Two days later my mum radar went off slightly when she was sleeping more than usual. By the third day her headache was very intense and we went to see the GP. While in the doctor’s office she passed out. Three hospital emergency room visits later she was finally admitted, with an MRI being performed within 24 hours. There were extensive lesions all over her brain including the brain stem.
The next day she was taken by care flight to a major children’s hospital. When we arrived, the neurologist told us “What your daughter has is acute necrotizing encephalopathy”. We were told one third of patients die, one third have severe disability and the remainder have a good recovery. Because Kate has the genetic version, she is susceptible to recurrences. Twelve years later we now know exactly what she had at 11 months of age.
Kate now has an acquired brain injury. She is brave, strong and has enormous courage. Of those that survive, many children with ANE have severe disabilities caused by their own immune systems attacking their brains. ANE has no cure and no definitive treatment. ANE is both genetic and non genetic, randomly attacking previously healthy children, teens and occasionally adults.
It can be very hard at times not to live in perpetual fear of every virus that is out there, particularly in winter. We would love every emergency room doctor to be aware of complications of influenza and other viruses, as fast treatment is imperative for ANE. For further information, please see – www.aneinternational.org