On the 9th September 2024 our life changed suddenly and unexpectedly and we really weren’t prepared for what was ahead of us.

My dad, Gordon Haxton, went into a meeting at work and couldn’t remember his colleagues names and couldn’t get his words out. He came home and went to bed with flu like symptoms. When he woke he still wasn’t right and my mum raised her concerns and took him to the doctor. He was assessed to see if he’d had a TIA but doctors had ruled this out and he left with antibiotics. The next day he still wasn’t right so went back to the doctors where he nearly collapsed and was then sent in an ambulance to ninewells. He was given IV antibiotics overnight and was discharged by a doctor the following day. I remember being very confused at his discharge as he was still very delirious and couldn’t string a sentence together that made any sense. He came home and still no improvement and was actually getting worse. He was then re admitted the following day after ANOTHER visit to GP. This is where it went from bad to worse at a rate of knots. He was in HDU where he was struggling to breathe and could hardly hold a cup of water to his mouth. I remember visiting and was in tears as I could tell something was seriously wrong. Doctors were very confused as to what was wrong and were asking my mum lots of questions to try and get to the bottom of it. Finally we got some answers after a lumber puncture and it came back with encephalitis. We had no idea what this was and had never heard of it before but thought it was maybe a positive they had an answer so that they could treat it properly but no they then had to try and find out what type my dad had before treating which turned out to be Herpes Simplex. My dad had never had cold sores or anything stemming from this virus previously in his life but we were told this is something that can lie dormant in your body.

Lots of meetings were being held by consultants over the country to try and work out the correct medication to give to treat this. It was decided that he’d be put into an induced coma to try and give his brain and body a rest whilst pumping him with medication. We were all taken into the family room and given this news. We couldn’t believe what was happening and just kept thinking we must be living a nightmare. We were pacing the hospital whilst we were waiting for this to be done and checking the clocks constantly. Finally he was back on the ward in ICU but I was scared to go and see him as I knew he would be ‘sleeping’ with lots of tubes in his mouth. We were playing music and speaking to him like normal knowing we wouldn’t get any response. Lots of machines bleeping and having a nurse by his side 24/7. This became our daily routine visiting and being by his bedside and during the night phoning at all hours to check how he was. Staying with my mum and her staying at ours to try get through this nightmare together all whilst trying to be strong and pretend nothing was wrong for my 9 month old daughter. At this rate we were just living from hour to hour day to day. It seemed like it was 1 step forward 2 steps back. Just as we could see a glimmer of hope or positiveness the doctors would find something else wrong.

He then contracted CMV in his lungs so was also fighting this. We were then told to expect the worst and that it was unlikely that my dad would pull through. We were all distraught and couldn’t imagine our lives without him in it. The daily visits continued and one Saturday morning when my mum and auntie were visiting he moved one of his legs. This was a major step although sounds very small. We couldn’t believe it and it gave us a glimmer of hope. He then caught pneumonia and a bacterial infection so took another step back. We were having to wear masks, aprons and gloves. He was really putting up some fight. Doctors discussed having a tracheotomy fitted which we were nervous about but seemed to help him a lot rather than having all the tubes in his mouth and nose. From here he seemed to continue to make some progress. We were able to hear him speak for small periods of time for the first time in weeks although difficult to make it out. He was getting daily physio and eventually managed to get him on his feet again not knowing if he’d need to learn to walk again or not. He was in ninewells for 3 months before being transferred to RVH for another 3 months. He would have been in longer but we just wanted him home in our care. We were told he would be left mentally disabled for the rest of his life but physically he seemed to be okay. My dad’s been left with memory loss and aphasia. He can’t remember names and can forget day to day if he has a wife/son/daughter/granddaughters. This is so tough to deal with but we keep living in hope and trying to help him progress in his recovery. We had just celebrated his 60th birthday a week prior, he was due to retire 4 weeks or so after he took ill. Him & my mum were to celebrate 40 years married the month after on a cruise they’d been longing to do for years. They were looking forward to enjoying their retirement together and spending time with their granddaughters. All these things he’s not managed to do and I can’t help but think everyday how cruel and unfair life is.

From the start it has certainly been an emotional rollercoaster and still continues to be a 16 months down the line. We truly believe if it hadn’t been for my mum being by my dads bedside constantly helping him with therapy and my aunties medical knowledge he wouldn’t be where he is today, which we are hugely grateful for. My mum is now my dad’s full time carer. She is amazing and gives him the best he could get but of course this takes its toll on her and us as family trying to help and support them both whilst trying to continue with life/work/childcare. My mum is so grateful for my brother and I along with our partners and close families help and support.

We are still trying to figure things out and learn the new normal but we have started to fundraise to help and raise awareness for the encephalitis society so would appreciate any donation big or small 🫶