BY CALUM FRASER
The mum of a disabled 15-year-old is calling on the public to help her to give her daughter a 16th birthday to remember.
Willow Bush, from Plumstead, lives with Aicardi syndrome, a rare genetic condition causing her to experience severe and uncontrolled epilepsy and learning and mobility disabilities.
She is mostly non-verbal, but music lifts her spirit as she sings and dances when she listens to it. Viv Bush, Willow’s mother, is now asking for the public to help her organise a music festival for her daughter’s 16th birthday on October 6.
Viv said: “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.”
Willow had her first seizure when she was four months old. Her life changed from then. She now experiences seizures several times a day, including dangerous drop seizures, where she falls to the floor with no warning.
She wears a helmet to protect her head and face, but the knock to Willow’s confidence has not been healed, and she has lost her independence.
Viv said: “You don’t ever get used to your child suffering. Every single seizure is still horrible, and although they scare Willow, she is incredibly resilient.
Even after a nasty seizure, she’ll be smiling five minutes later. Her default position is happy, and that’s what we try to focus on.”
The family are being supported by the Make-A-Wish charity, which helps to give children with critical illnesses a life-changing experience.
“We’ve tried to make her life as full and interesting and stimulating as possible,” Viv said, “but there are limits to what we can do for her.
“That’s why organisations like Make-A-Wish are so important. So many people have been part of Willow’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.”
The family are aiming to have around 200 people at the festival, made up of family, friends, teachers, therapists and doctors.
Willow’s favourite musicians are George Ezra, Kaiser Chiefs and Jess Glynne.
At the moment the family still need street food trucks, entertainers, bands and props to create the festival atmosphere. Helen Gee from Make-A-Wish, said:
“We all love music, and enjoying it live is an incredible experience, which Willow deserves to experience like anyone else.
“When granting poorly children’s wishes, we often find that local communities join together and make amazing things happen, so now we’re asking you – do you know anyone who can help make Willow’s one true Wish come true?
“Could you donate towards her wish, or supply something for her festival?
Children like Willow endure things that no child should face, and we believe that by providing quality time away from the daily realities of living with their condition, we can give a child hope for the future, strength to cope and resilience to fight their condition.”
To help Willow go to www.makeawish.org.uk/in-kind-submissions or telephone 01276 405060.