What is it like caring for someone with encephalitis?

Sarah and Kristin, who are both volunteers with the Encephalitis Society share their experiences of caring for their children for Encephalitis Information Week 2021.

For more on Encephalitis Information Week, visit our campaign page.


Nothing can prepare you for the devastating diagnosis of encephalitis. Nicholas was sixteen years old and it would blight his life until he died twenty years later; he was not given the opportunity to grow and flourish as we expected on the day of his birth. I was working as a Nurse when he first became ill, but had little knowledge of encephalitis and the subsequent devastating effects on Nicholas.

Nicholas required 24 hour monitoring for the next twenty years and, in the last five years, he required 24 hour full-time care. For the last five years, Nicholas lived in a specialist unit with 24hr care; sadly we were unable to provide that level of care, as the previous fifteen years had taken a toil on us, as parents and as a family. Nicholas’ body and mind gradually failed from the day of diagnosis and rapidly over the last five years. His life at times became a round of hospital appointments, admissions and referrals to specialists. Our lives revolved around these appointments plus the endless ‘fighting’ for services that he was entitled too. Two years after his death, he received a letter stating that they had not calculated his disability monies correctly and he was owed a lump sum!

Nicholas’ illness affected our daughters too. The brother they once knew was not quite the same, and he required so much of our time and energy. Our youngest daughter doesn’t remember a time when Nicholas was well; she was six at the time. The elder sister mourns for the brother that she ‘lost’ as she was fourteen.

Caring for anyone with multiple disabilities is relentless and exhausting; our love for Nicholas is what enabled us to care for him over a twenty year period.


Ten years ago I was just a typical mom to a 4.5 year old.  Isabella was a smart, beautiful, happy go lucky preschooler.  She loved soccer and made friends where ever we went.  Isabella was social to a fault.  We were adventurous and constantly on the go.

Ten years ago on November 25th, 2010 it was the first Thanksgiving that Isabella wasn’t sick.  All prior Thanksgivings were spent in the hospital or at home sick on the couch.  I was so excited that we would get to celebrate with family and friends.  Thanksgiving night at 7pm Isabella started screaming with a migraine.  By 7:10pm the vomiting started and by 10:38pm Isabella was confused and disoriented.  As I carried her to the car I had no idea the car ride would take so long as I had to keep pulling over to help her.  As the clock struck midnight, I carried my baby girl into the emergency room having no idea that our lives were about to change forever.

Ten years ago I had only heard of encephalitis with regards to mosquitos.  I had no idea that it was this horrible condition that destroyed your brain.  I thought comas were like you see on tv where the person wakes up and they are fine.  I didn’t realize how precious our brain was.  I thought your heart was the center of your body keeping everything going.  I didn’t know that the brain is responsible for your heart, breathing, moving, talking and every other function in life.

Ten years ago I didn’t have much faith in anything.  I had watched my Nana and one of my best friends die, horrible deaths due to horrible diseases.  I couldn’t wrap my mind around the fact that doctors were telling me that my baby wasn’t going to make it through the night.  I pleaded with God or anyone that was listening to please save my daughter and that I would handle whatever the consequences were of that choice.

Ten years ago our journey began.  A journey that has been bittersweet.  I have seen some of the most horrible, heart-breaking things happen to my baby.  I have held her stiff, distorted body praying for her pain to end.  I have watched as she lay in a coma not knowing if she would ever wakeup and not wanting to sleep if it meant missing a precious moment with her.  I have also witnessed a miracle as I watched Isabella take her first breath off the vent and eventually wake up.  I have watched my daughter become my hero and the person that I admire most.  I never knew how proud I could be as I watched her fight and determination shine through on some of our darkest days.  I didn’t know I could possibly love someone as much as I love Isabella.  Ten years ago everything changed and nothing will ever be the same.

“And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over.  But one thing is certain.  When you come out of the storm you won’t be the same person who walked in.”  Unknown