FAIR FOR RARE: Kate’s Story
When you have four children with the eldest being 25 and the youngest is 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 in a care flight to Sydney it was that serious. When we arrived, the neurologist told us “What your daughter has is Acute Necrotizing Encephalopathy”. We were told 1/3 patients die, 1/3 have severe disability and the remainder have a good recovery, because Kate has the genetic version, she is susceptible to recurrences.
Kate now has an Acquired Brain Injury, which affects all areas of her learning, in particular her memory. She also has chronic fatigue and constant headaches. As a teen, the effects of an ABI and the new version of herself have been a struggle that Kate has faced with great courage. I feel we have been very blessed with our support from Kate’s medical teams at the hospital and our local support services. Kate has a caseworker that has been fantastic, liaising with Kate’s school and other services, as well as the support she herself gives us as a Speech Pathologist.
Kate now has the influenza vaccination every year. 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 and family stories please see – www.aneinternational.org