Willow, 15, Aicardi syndrome, I wish to host my own WillowFest festival for my birthday
Fifteen-year-old Willow from south east London is living with Aicardi syndrome, a rare genetic condition, causing her to experience severe and uncontrolled epilepsy and learning and mobility disabilities. Her wish is to have her own music festival, WillowFest, in Tunbridge Wells and Make-A-Wish needs YOUR help to grant Willow’s wish! If you can help to supply, source or create something for Willow’s wish, please tell us using this form.
The first seizure happened when Willow was just four months old, and life changed completely. She has multiple seizures every day, including dangerous ‘drop’ seizures, where she falls to the floor with no warning. She now wears a helmet to protect her head and face, but the knock to Willow’s confidence has not been healed and she had lost her independence.
“You don’t ever get used to your child suffering,” explains Mum Viv. Every single seizure is still horrible, and although they scare Willow, she is incredibly resilient. 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.”
Music, books and monkeys are Willows favourite things. She is mostly non-verbal but music helps her to come alive, as she sings, dances and gets lost in the melodies.
Mum Viv has thought about applying for a wish for Willow for a long time. With her 16th birthday approaching, she feels now is the right time to create a really special experience for Willow. Taking her to a music festival to explore her passion would mean navigating busy crowds and campsites with her wheelchair so, until now, it hasn’t really been possible.
She 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.”
Make-A-Wish needs YOUR help to make Willow’s wish for her own music festival a reality. Can you or someone you know spare some time on Saturday 6th October in Tunbridge Wells?
We are looking for:
Bands to perform pop music (Willow loves George Ezra, Ed Sheeran, Maroon 5, Jess Glynn, Olly Murs, Jessie J, Take That, Bon Jovi and Kaiser Chiefs so artists with a similar style to any of these would be great)
Food, popcorn, cake and ice cream trucks or caterers;
Performers – dancers, clowns, magicians, fire breathers and acrobats;
Face paint and glitter artists;
Festival flags, bunting and decorations;
Any other offers of help!