Family of 15-year-old with Aicardi syndrome launch fundraiser to put on own festival

Willow suffers from Aicardi syndrome, which is a rare genetic condition that can cause random and severe epileptic seizures.

Mother Viv explains, "Even after a horrible seizure, she'll be smiling five minutes later. Her default position is 'happy' and that's what we try to focus on.”

For her upcoming 16th birthday, Willow's family are looking to give the South Londoner her first festival experience, through the Make-A-Wish charity.

The idea of hosting their own festival came about through WIllow's love for music. The illogical idea of going to a regular music festival presents a series of difficulties as Willow's wheelchair will limit navigation through large crowds and campsites.

Speaking about the fundraiser, Willow's mother Viv explains, “We tried to take Willow to a local festival. Although she loved aspects of it, it was really hard work and too full on for her. We want to give Willow an experience she wouldn’t otherwise be able to have – her very own music festival – WillowFest! We’ve tried to make her life as full and interesting and stimulating as possible, but there are limits to what we can do for her. So many people have been part ofWillow’s life, and we want everyone to be involved in this, as a thank you and as a celebration of Willow. We wouldn’t be here without the support of all of those people.”

Looking to host the festival in Tunbridge Wells, the pledge is aiming for a total of £2,150. The family are looking to get performances from musicians similar to Willow's favourites George Ezra, Ed Sheeran, Maroon 5, Jess Glynne, Olly Murs, Jessie J, Take That, Bon Jovi and Kaiser Chiefs.

The fundraiser also states they are searching for catering, entertainers, decorations and face-painters to bring the festival to life.