Willow, who's living with Aicardi syndrome, wished to host her own WillowFest festival for her 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 to have her own music festival, WillowFest, was granted in October 2018.
Life changed completely
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 never get used to your child suffering
“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.”
Celebration of Willow
Music, books and monkeys are Willow's 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 turned to Make-A-Wish to create an accessible festival experience for Willow and her friends.
She explains, “We tried to take Willow to a local festival. Although she loved aspects of it, the busy crowds and accessibility made it really hard work and too full on for her.
A festival wish for everyone to enjoy
We wanted 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 of Willow’s life, and we wanted everyone to be involved in her wish, as a thank you and as a celebration of Willow. We wouldn’t be here without the support of all of those people.”
A community of supporters
Wishgranter Becky put out a call asking members of the public to help grant Willow’s wish by donating their services, time and skills. The response was incredible and performers, bands, and individuals all offered their help to create one of Make-A-Wish UK’s biggest wishes to date.
WillowFest comes to life
On the day, guests arrived, live music played, cameras rolled and everyone laughed, danced and chatted. When Viv, Willow and her sister arrived, everyone cheered.
Surrounded by friends
Viv said; “I think Willow was a bit shocked to begin with, but as soon as she got to the music she lost that and it relaxed her. She had a lovely time. At the front of the crowd, she was surrounded by her friends, old and new, and they were all enjoying it with her.
An incredible thing
“I can’t quite believe it’s happened. This is a memory that all of us will have forever. Not just us three, but all of the people here. I’ve had so many people tell me this is just such an incredible thing Make-A-Wish have done and it’s true.
Emotions run high
“I’ve felt so much emotion today – I’ve been really overwhelmed by the amount of goodhearted people that have come together to make this happen. It has been an amazing collective effort of people who do and don’t know Willow that have so generously given their time.
“It’s been an absolutely fantastic celebration of Willow’s life. The doctor who diagnosed her was here, her old speech and language therapist, her nurses, her old teachers.
Willow is the bravest most resilient and sweethearted person. She is incredible, and music gets to her in a way that nothing else does. Seeing Willow happy has been the best thing today.
"I would like to thank Make-A-Wish wholeheartedly for making this happen. They make wishes come true and that’s phenomenal. Thank you to all the people who gave up their time and generosity.”
Thank you to everyone who was part of Willow’s wish!