Daniel sadly passed away after a few years from a diagnosis of Herpes Simplex Virus (HSV) encephalitis. This is his story told by daughter, Natalie.

 

Symptoms and diagnosis

In September 2022 my father was showing odd symptoms like confusion and flu-like symptoms. My mother took him to the hospital and after performing several testing it was confirmed that my father was diagnosed with Herpes Simplex Virus 1 (HSV1) Encephalitis, a diagnosis we have never knew about till then.

Hospital and rehabilitation center

After that, things were a rollercoaster of emotions as my father went into a coma for 3 weeks. When he woke up, it was such a relief, but his neurologist explained to us that its going to be a very hard and long recovery from here.

My dad was moved to the first rehab facility where he would be weened off his trach and eventually breathe on his own – which he did – and was showing fast recovery. He was then admitted to the next rehabiliation facility where he was to begin physical and occupational therapy.

The second rehabilitation was where we noticed the severity of the damage encephalitis had done to his brain. He had memory loss and did not know who we were. I remember visiting him and he asked me who I was. I said ‘I am your daughter’ and he replied “you are very pretty”. It was hard to not cry. That same year I was planning my wedding, but not knowing if my father would walk me down the aisle. However, I remained hopeful for my mother and brother.

My father unfortunately did not get the proper therapy. The staff seemed to lack patience due to him being so weak and unable to move much. We had one nurse tell us we need to look into a long term facility but we weren’t giving up on him.

At home

We brought him home where he continued with home care which, again, the staff did not show much patience in his sessions. So, my brother and mother did the best they could to work with him little by little so he could regain strength to walk again.

On Christmas morning of 2022 my father used his walker and walked for the first time again. From there we began to see hope. He was slowly doing things he enjoyed – like watering the plants. In February 2023, he saw my mom trying to replace a light bulb in the kitchen and he climbed that ladder and replaced it on his own – which was a sense of relief because my father was always handy before encephalitis. He previously worked installing windows and doors and enjoyed always building or repairing something at home.

Seizures

In February 2023, my father suffered a seizure so he was admitted back into hospital. This was the same hospital where we were not happy with his care. They had him sedated most of the time and the medications were beginning to take a toll on him. He grew agitated and the hospital staff restrained him to the bed. We fought and spoke up for him and eventually the doctor on that floor discharged him for no progress which was very upsetting.

At home he grew very difficult. He was given two anti-seizures medications.

Second opinion

We decided to get a second opinion at another hospital, hopefully to give him better care and make some adjustments to his medication. At that second hospital, they ran EEGs and changed his medication regimen . Then they transferred him to a rehabilitation facility he was originally at before to continue his therapy. We were pleased he was progressing his sessions and this time the staff were patient with him.

Special family event

We brought him home, then on May 2023 – my wedding month. The neurologist instructed we up his dose of anticonvulsants which made my father very very groggy and sluggish. My father ended up losing balance and falling which caused a hairline fracture to his tailbone which needed a minor surgery.

It was the day of my wedding so my mother decided to schedule his surgery after my wedding so he can attend. My father was in a wheelchair and the wedding planner came up with a plan to have my grandfather walk me down the aisle and then meet my father half way and push his wheelchair to my husband but my father had other plans.

When I walked down the aisle and met my father he uttered the words ” I want to do it” and got up slowly with help from me and my brother and he walked me down the aisle, that is a moment that I will always cherish.

Decline in health

My father got his surgery and more therapy and went home, but unfortunately the caregiving was taking a toll on my mother and brother since they lived together with my father.

On December 24th of 2024, I found out I was pregnant and then on January 2025 my father fell again at my home. He was taken to the hospital with a minor brain bleed. It was then that all 3 of us came to realization that my father was not going to get better and we decided to place him in a home. This was so hard for us – my father who was a hard working man in his 60’s a nursing home. It was just so heartbreaking.

His health began to decline which led to more hospital visits. My father suffered so much and we decided to place him on Hospice care so can be comfortable.

On March 1st we got a call from the home that he was being admitted to the hospital for respiratory distress and he spent the weekend in the hospital.

Saturday March 2nd was my gender reveal where we got to tell the family that we are expecting a little boy but it was bittersweet.

On March 3rd the nurse called us that my father’s breathing was growing shallow and we all raced over to spend our final moments with him. March 4th at 2:57 my father had passed away. It was a sense of sadness but peace because my father said he did not want to live a life of suffering.

Through my father’s journey with HSV1 Viral Encephalitis we learned so much. We learned that in our area it is not common or a diagnosis that is well known. And with that, we feel that if the healthcare facilities had better knowledge, his recovery would have had a better prognosis especially being caught in the early stages.

As I write this, it is exactly a year from his passing and with heavy tears in my eyes I worked up the courage to honour him and share his story – with his 6 month grandson by my side who will always hear about the amazing grandfather he has watching over him.

We hope his story will help those in need because we know how much it helped us finding Encephalitis International and connecting with people who had encephalitis or a loved one who was diagnosed.

If you would like to connect with others then more information can be found on our get help page.

Story published May 2026