In this moving video feature from Metabolic Support UK, Millie and her parents share their journey of living with cystinosis. Despite the challenges of managing a complex treatment regimen and the looming threat of kidney failure, Millie’s determination to “keep punching” shines through. Her story highlights the urgent need for continued research, better therapies, and community support for those affected by rare diseases. For the Cystinosis Foundation UK, Millie’s experience is a rallying cry to amplify patient voices and accelerate progress toward a future where young people with cystinosis can thrive.
Watch the full video and join the movement for change: Millie’s Story.
