Sophie and Emilia will be doing a sponsored silence on Saturday 22 November 2025 to help raise funds to support Sophie’s best friend, Violet.

At just six years old in 2024, Violet was diagnosed with PKAN, a devastating and rare life limiting neurodegenerative disease for which there is currently no cure.

Violet has been accepted into a drug trial at Great Ormond Street hospital that could help to slow or even halt the progression of the disease, and give her precious time. We are fundraising to cover travel expenses and potential medical costs not covered by the NHS.

Violet first began falling over regularly and her right hand and arm didn’t move how it should. An MRI scan revealed the devastating diagnosis. PKAN slowly robs children of their ability to walk, talk, eat, see, and live independently, and there is currently no cure. Violet’s eyesight is already beginning to deteriorate. Violet’s genetic make up means her symptoms are still relatively mild, and we are holding onto hope that her progression will be slower, giving us precious time while researchers work to find a treatment.

Violet is a kind, sunny little girl who has brought so much joy to those around her. Every donation big or small will be gratefully received as Violet bravely undergoes the drug trials.