Personal Experiences with Acquired Brain Injury: My Brother’s Journey.

In 2023, my world was turned upside down when my brother Peter suddenly became very ill while at Glastonbury Festival. It was supposed to be a weekend of fun and music, but instead, it became the beginning of a life-altering journey for him. For a week, Peter had been battling persistent headaches, something I, as both his sister and a nurse, had urged him to take seriously. I encouraged him to see his GP, but little did I know that the headache he was experiencing was just the beginning of something far more serious.

Peter began to experience alarming symptoms whilst at the festival: one-sided weakness, facial drooping, and aphasia—the inability to speak or understand language. The severity of his condition led to his urgent transfer to A&E, where, after several scans and tests, he was diagnosed with viral encephalitis. This condition, an inflammation of the brain caused by a viral infection, was something I had studied in my nursing career, but nothing could have prepared me for how it felt to witness my brother suffer from it.

Encephalitis

Viral encephalitis is a rare, often life-threatening condition that causes inflammation of the brain. It can lead to a range of neurological issues, including cognitive impairments, speech difficulties, and physical weakness. In Peter’s case, the impact on his communication and mobility was profound but fortunately short-term. But the effects were not just physical; encephalitis also has a significant emotional and psychological toll on both the individual and their loved ones.

Peter’s journey wasn’t easy. It was weeks of uncertainty, hospital stays, tests, and treatments. As a nurse, I understood the medical side of things, but as his sister, it was an entirely different experience. It didn’t matter how much I knew about medicine—I was helpless in the face of watching my brother struggle. For the first time, I felt like I was just his sister, not the clinical professional.

Thankfully, Peter has made a full recovery, thanks to his resilience and the support of his incredible medical team. But that recovery journey wasn’t quick or easy. It changed the way I think about brain injury, recovery, and the role of support for those affected by neurological conditions.

The Eden Dora Trust

I’m so proud to share that my brother Peter, after his own life-changing experience with encephalitis, will be running the London Marathon in April 2025 to raise funds for the Eden Dora Trust.

Peter's recovery from encephalitis has been remarkable, but his journey highlighted the severe lack of rehabilitation support available to children suffering from acquired brain injuries (ABI). That's why Peter is running to raise awareness and much-needed funds for the Eden Dora Trust, which helps fund research and provides essential support for children with encephalitis.

This condition can severely impact children’s cognitive abilities, speech, and overall development, yet many children receive minimal rehabilitation. Often, schools are left to manage these children, but most educators are not equipped with the necessary tools or knowledge. The Eden Dora Trust addresses this gap, offering resources for medical care, rehabilitation, and educational support to help children recover and thrive.

Essential Support

Children with ABI need tailored support—both medical and educational. Proper rehabilitation can make a world of difference in helping them regain their lives. Unfortunately, the lack of support is a significant issue, and that’s why Peter is running to raise awareness.

Please consider supporting Peter’s marathon run and helping fund research and care for children with ABI. You can sponsor him through his JustGiving page.

If you are exploring case management for someone with ABI, I’m here to help. Reach out to me at admin@annaecm.co.uk or via my contact form.