Emma’s Letter: A Mother’s Journey Through Encephalitis
Dear Reader,
I really wish I wasn’t writing this. I wish with all my heart that I didn’t know the turmoil that comes with having a very sick child. I can’t escape my memory of pleading for hospital staff to help our daughter, our daughter who until then, had rarely been ill.
It is difficult to find the words to express how isolating it is when a child is severely ill, recovery is not guaranteed, and the future, all of a sudden, becomes less certain. Encephalitis had that effect on my family.
Our lives changed in 2024 when our 15 year old daughter had auto immune encephalitis. Up until then, we hadn’t realised how lucky we were. School was straightforward for our daughter, friendships would come and go, everything was fairly normal. Encephalitis was a complete unknown to us. On many a sleepless night, I researched encephalitis, and focussed on the positive outcomes that I read about.
I quickly discovered how difficult it is to diagnose encephalitis, and for us it took several weeks of knowing something wasn’t right, until the possibility of encephalitis was first mentioned. Our daughter had several seizures, she was confused, she didn’t know how old she was, she couldn’t figure out how to put on her seatbelt in the car, the walls were moving, she was hallucinating. She’s a teenage girl, it’s mental health. That’s what we were told. We were asked if she might have taken drugs. We knew something serious was wrong. We kept being sent home from the hospital. We got lucky, a video I’d made of our daughter having a seizure was sent to the nearest Children’s Hospital. Discussions were had and this was when we were first told it could be encephalitis. To be honest, it felt like a relief. We felt that at last we were being taken seriously.
Our daughter spent 6 months in the nearest Children’s Hospital, which is 3 and a half hours from home. We learnt a lot, we went through things no parent should ever have to experience. Our daughter underwent various treatments for autoimmune encephalitis. And then rehabilitation – after the initial medical treatment, our daughter had to learn all the basics – how to talk, how to swallow and how to walk. We helped her learn how to dress herself, how to feed herself, we had to re socialise her.
Throughout this time in hospital, The Encephalitis International website provided me with hope. Yet I still felt so alone with no-one who really understood what it is like to see your child so desperately unwell. I contacted Encephalitis International through their helpline, and then joined the online parent support group. This helped me to feel less isolated, and I appreciated the opportunity to share ideas with other parents.
In August 2024 our daughter came home from hospital. What I’d thought would be a real positive was so scary. We went from having medical support 24 hours a day, to having nothing, apart from a phone number for the hospital ward in Bristol and the name of the local consultant. Once again, Encephalitis International were there for us. They provided information on how schools can support children who are recovering from encephalitis, and helped me through my endless questions on what ongoing treatment might be needed. Most importantly, I continued to join the online parent support group, a genuine lifeline for me when I felt desperately alone and out of my depth. Within 6 months we had gone from being a carefree family who didn’t really worry about the future, to having so much uncertainty on what the future might look like for our daughter – she looked like the girl she was 6 months earlier, but due to her brain injury from encephalitis, there would be challenges ahead that previously didn’t exist.
Through Encephalitis International I have made contact and met up with another ‘Encephalitis Mum’ and the support we provide for each other is invaluable. Our children are a similar age and we are able to help each other through the trials we face – such as managing Year 11 mocks and fatigue, choosing a college course and how to get through the college interview, as well as talking about chasing up hospital appointments. We can laugh together about the dramas we face and are in regular contact, checking in with each other regularly. Our daughters have met up twice now. This is really important for both of them in accepting their illness, their ABI (acquired brain injury), and how they can still lead a full and positive life.
I started this letter as a way to try and raise awareness of encephalitis – it is a devastating illness for anyone who gets it; it is life changing for the whole family. The future is an unknown and there are so many uncertainties for any child who has encephalitis. I have to focus on the positives and Encephalitis International has helped me enormously with that.
The Encephalitis Children’s Appeal that is currently running has the tag line ‘Because encephalitis shouldn’t steal a childhood’ – that is difficult for me – my daughter lost a part of her childhood, but in reality, with the support from Encephalitis International, and with the support they provide me, we are able to ensure that we can help her experience a full and happy childhood, and we are able to prepare her for what will hopefully be an independent and positive future.
Encephalitis can affect anyone – please, if you have read this far, please forward this letter, we need a greater awareness of encephalitis. The quicker the symptoms are recognised, the quicker the diagnosis, and the sooner treatment can start. Life is certainly different after encephalitis. I am grateful that every single day is a day further along in my daughter’s recovery; I am so proud of her determination to overcome the challenges she still faces.
Even the smallest donation to the Encephalitis Children’s Appeal will go a long way in helping families like mine, families who are in the midst of navigating their child’s recovery from encephalitis. I genuinely feel that without Encephalitis International I would have struggled so much more than I have. The knock on effect to this is that without Encephalitis International, I would not have been in a position to emotionally support my daughter over the last couple of years. Encephalitis International continue to support so many families through their helpline, support groups, factsheets and many resources; they continue to give my family the support we need to help my daughter live her best life.
Thank you Encephalitis International.
From,
A very grateful mum