Back to today’s briefing

Story perspectives

Families Urge NHS to Fund Life-Saving Batten Therapy

2/22/2025

37 6

Summary

Story summary

Lucy Carroll and her children, Ollie, 14, and Amelia, 11, are part of a heart-wrenching group of 36 UK families grappling with Batten disease, anxiously awaiting NHS England's funding decision for the life-saving enzyme therapy, Brinuera. At £520,000 per child each year, this treatment is vital for slowing the disease's relentless progression and preserving their children's quality of life.

1 of 1

Story summary

Lucy Carroll and her children, Ollie, 14, and Amelia, 11, are part of a heart-wrenching group of 36 UK families grappling with Batten disease, anxiously awaiting NHS England's funding decision for the life-saving enzyme therapy, Brinuera. At £520,000 per child each year, this treatment is vital for slowing the disease's relentless progression and preserving their children's quality of life.