Raising vital funds for nine-year-old Violet - Profits from the sale of every t shirt go to the Hope For Violet JustGiving fundraiser.

Violet is nine years old. She is articulate, bright, funny, and kind. Two years ago she was diagnosed with a devastating terminal disease called PKAN.

PKAN affects 1-3 in a million globally. It is a neurodegenerative disease that causes iron buildup in the brain. The main symptom is muscle spasms known as dystonia. This is already starting to affect Violet's speech, her right hand, and her feet, causing her to fall regularly. Violet loves to draw, now having limited use of her right hand she has taught herself to be left handed.

PKAN sufferers lose their ability to walk, talk, and eat. Eventually requiring a wheelchair and feeding tube.

With diagnosis came the loss of hope. We thought we were searching for something we could cure, instead we were told there is no cure. The average life expectancy is just 10 to 12 years, although Violet’s genetic make up means we may get a little longer than that.

Funds raised will be split between the Loving Loic Foundation and to Violet herself. With your support the team in the US will be able to come closer to finding a cure. You will also be helping Violet gain access to non funded therapies to improve her day to day life, and helping her afford specialist equipment for her future needs.

Help us to put hope back in Violet’s life so she can become the scientist she dreams to be.

To find out more about the Loving Loic Foindation visit https://www.lovingloic.org

To keep up with our fundraising efforts, and for updates on our walk follow @hope.for.violet