Freddie Truelove was having 12 seizures a night.
He has Dravet syndrome — one of the most severe and treatment-resistant forms of childhood epilepsy in the world. Current medications often barely make a dent. Families learn to live in a state of constant vigilance, watching for the next event, the next hospital trip, the next day that disappears into exhaustion and fear.
Then Freddie joined a clinical trial for a drug called **zorevunersen**. And everything changed.
'We now have a life we didn't ever think was possible,' his mum Lauren said. 'And most importantly, it's a life that Freddie can enjoy.'
Freddie went from 12 seizures a night to one or two short ones every few nights.
**The trial results**
Published in the *New England Journal of Medicine* in March 2026, the study enrolled 81 children and adolescents aged 2 to 18 years from the UK and the United States — all diagnosed with Dravet syndrome, all struggling with seizures that existing treatments couldn't control.
They received zorevunersen through a lumbar puncture — a standard spinal procedure — either once, twice, or three times over a three-month period. Of those 81 participants, 75 continued into an extension study, receiving 45mg of the drug every four months for 20 months.
The results exceeded expectations.
On average, the number of convulsive seizures dropped by **between 59% and 91%** across the cohort. Beyond the headline numbers, researchers observed real improvements in health, quality of life, and adaptive behaviour — the everyday skills that seizure burden often erodes over years.
Side effects were mild or moderate. No children stopped the study due to safety concerns.
**What makes it work**
Dravet syndrome is usually caused by a faulty **SCN1A gene** — the gene responsible for producing a protein that helps nerve cells function properly. When that gene is broken, the protein is produced in insufficient quantities. Nerve cells misfire. Seizures cascade.
Zorevunersen is an **antisense oligonucleotide** — a molecular tool that targets the underlying genetic cause. It doesn't mask the symptoms. It works to increase production of the NaV1.1 protein from the remaining healthy copy of the gene, restoring the nerve signalling balance that the faulty gene disrupts.
In plain terms: it addresses the cause, not just the symptom.
The study authors describe the medication as potentially **disease-modifying** — meaning it may not just reduce seizures, but slow the progression of the condition itself.
**What comes next**
A global Phase 3 trial — called the EMPEROR study — is now underway to confirm these results in a larger, randomised population.
For a condition that affects roughly **1 in 15,000 children** worldwide, and for which current medicines often fall frustratingly short, zorevunersen represents one of the most credible therapeutic hopes in years.
For Freddie and his family in Huddersfield, it already is that hope — turned real. 💙
*Sources: Epilepsy Action · Dravet UK · New England Journal of Medicine (March 2026, doi:10.1056/NEJMoa2506295) · Children's National Hospital · Biogen · Science Daily*
