** Update 22nd April

We have been completely blown away by the incredible support we have received with the launch of this fundraiser. It means so much that so many people want to help Violet achieve her dreams. We had no idea how far her message would spread so we initially set a low target trying to be realistic.

Over the last two years the Loving Loic Foundation has raised $2 million for the gene therapy project. They need to raise $5 million in total by the end of 2026 to make it through to clinical trials.

With almost nine weeks still to go before our walk we have decided to up our target again, this time we're aiming high with £25k.

Please keep sharing our post and talking about Violet and all the other children suffering with PKAN. Let's come together to find a cure for good **

Hello, on June 20th 2026 we will be climbing Snowdon twice in one day hoping to raise £10,000 in aid of a wonderful child called Violet.

Funds raised will go towards lifesaving gene therapy, and for Violet’s ongoing lifestyle needs.

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.

Thanks to Sherine Blackford, founder of the Loving Loic Foundation, a team in the US is currently searching for a cure. They’re researching gene therapy that could change everything for Violet and others like her, creating a blueprint that could be used to cure other rare diseases.

Violet has always dreamed of becoming a scientist, she wants to make medicines to cure other sick children.

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 https://www.instagram.com/hope.for.violet?igsh=MWMzbXZwZnQzODh2bQ==

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