I lost my son - now I fight for change

After losing her son Christopher, Julia Hopper has become a powerful advocate for change. Here, she shares her story of navigating epilepsy, autism and mental health challenges, and why she believes epilepsy must be better understood and supported, especially in young people with complex needs. Her voice is now helping others. 

A complex picture from the start 

Julia Hopper remembers her son Christopher as a “beautiful, glossy looking creature” - strong, bright-eyed and full of life. But behind his smile was a complex set of challenges. Christopher was autistic, had a learning disability, and in his teens, developed epilepsy. 

"I’d always been watching for signs. I knew that many autistic children go on to develop epilepsy. When it finally happened, it was terrifying."

Christopher’s first seizure came unexpectedly while staying with friends. He was 16. Julia rushed to the hospital, where doctors began to explore the possibility of epilepsy. It wasn’t until he had two more seizures in quick succession that the diagnosis was confirmed. 

“He was fragile,” Julia recalled. “He’d struggled with eating, and I felt the epilepsy had been latent. But once it surfaced, everything changed.” 

Navigating medication and mental health 

Christopher was prescribed lamotrigine, and later switched to sodium valproate. Julia read the medication leaflets carefully and was alarmed by the warnings about suicidal thoughts.

“He told me the tablets were giving him dark thoughts,” she said. She believes the mental health impact of epilepsy is often overlooked, especially in young people with complex needs. Christopher’s depression deepened, and he began experiencing psychosis. He was admitted to hospital, but Julia felt his autism and epilepsy were not properly understood. 

"He was admitted to hospital, but everything about his needs was ignored. I had to remind staff about his epilepsy medication."

A system that failed 

Christopher’s care journey was marked by repeated breakdowns in communication and safeguarding. Julia describes being excluded from meetings, ignored by professionals, and left to piece together a picture of his wellbeing from receipts from his spending and clues. 

“I was always watching. Had he slept, eaten, drunk enough? Was he stressed? I just had to be very vigilant.” 

Despite her efforts, she says Christopher was discharged from hospital without proper support and placed in a community setting that promised one-to-one care. Julia felt there wasn’t proper safeguarding at the facility. 

He had a seizure in the street and ended up in hospital again. I made a report, but nothing changed.

In the final weeks of his life, Christopher stopped taking any medication. Julia wasn’t told. A therapy session was cancelled without her knowledge, and he left the facility. It is believed he ended his life shortly after. 

Turning grief into action 

Julia’s heartbreak has fuelled her determination to fight for change. She has set up her own charity and now works to raise awareness and push for reform. 

"I want epilepsy to be flagged as a mental health risk. We need mandatory rules, better training, and legal accountability. These children matter. We need data to track patterns so that we have some idea of how to keep such young people safe."

Despite everything, Julia remains hopeful. Her advocacy has already led to an Article 2 inquest into Christopher’s death - a significant step. She continues to support other families and campaign for systemic change. 

“I believe every human has value,” she said. “We must stop making judgments about who is worth saving. My son deserved better. All our children do.”