Make way for a warrior princess

Make way for a warrior princess

In the fight against epilepsy, spirit matters more than size. Living with life threatening seizures every day requires immense courage.

Eve, a healthy, happy baby, began having seizures around 6 months old. Despite initial dismissal, her mother trusted her instincts and took Eve to A&E where epilepsy was diagnosed. Powerful medications were prescribed, but they caused severe side effects. Eve’s body swelled, she lost her smile, and became less responsive. Staying alive meant losing herself.

The next two years were a constant battle. Eve initially won against the epilepsy and some medications were withdrawn, but then a massive seizure struck, followed by more. Medication had to be increased again, leaving her sedated. This pattern repeated with different treatments, achieving only small wins at huge cost.

Eventually, Eve was diagnosed with a rare genetic condition affecting 650 children worldwide. Despite the challenges, Eve showed incredible resilience, wrestling on to come back stronger each time.

With the same spirit, Eve’s mother fought for Epidiolex, the only cannabis-based medication available for children on the NHS. It brought a spark back into her little warrior’s eyes and allowed her to reduce other medications that had left her unable to sit up, smile, or even notice the world around her.

However, Epidiolex is a basic, early-generation medication and the benefits are often temporary. Eve’s epilepsy fought back. Yet there’s good evidence that if a child responds well to Epidiolex, more advanced cannabis medications may work for them. But the break-down in the UK system means children like Eve, who are entitled to try these medications, can’t get an NHS prescription. A private prescription is completely out of reach for Eve’s mother.

As a last resort, Eve’s mother turned to illegal cannabis products. She hated breaking the law but couldn’t abandon Eve to battle alone. A treatment that here her mother must obtain illegally, is prescribed as standard to epileptic children in countries like Canada, Australia, the Netherlands, and India.

Seizure freedom is unlikely for Eve, but the question is what kind of life should this courageous child have? Should she be made to struggle on with an unwinnable battle, weakened by the very medications meant to help her, or should she experience a life like other children—filled with laughter and play? Join the #SaveTheUnicorn campaign and fight alongside Eve for a better life, where hope shines brighter and epilepsy is the loser.