5th November 2018…
Creating a festival with a difference, Mary Long took us behind the scenes at Willowfest to see how a wish became a reality…
‘I have been to a fair number of festivals in my time. I love the sense of freedom, letting the children roam around ‘free-range’ making friends and enjoying the elements, knowing that there is a huge group of like-minded people in the camp-site surrounding us. Our kids joke that there are normal household rules and then there are ‘festival rules’ where everything moves to a different beat and life is just on the whole much more relaxing. Who cares if you have to wait 57 minutes for a halloumi burger, or if you tripped and got covered head to foot in gooey mud, or if you stay awake till 4am then sleep the next day until lunchtime!? It wasn’t until a few weeks ago that I really sat down and contemplated how fortunate I am to be able to spend time at festivals with my children in this way.
My friend Viv sent me a message around the beginning of September to say that Willow, her eldest daughter, had been granted a Wish by the Make-A-Wish Foundation to have her own bespoke festival created in order to celebrate her 16th birthday. Willow is living with Aicardi Syndrome, a rare genetic condition, meaning that her everyday life is a series of multiple seizures, some of which can unexpectedly cause Willow to drop to the ground. Willow is also mainly non-verbal but lights up when listening to her favourite tunes. Viv tried taking Willow to a nearby festival a couple of years ago, but the crowds meant that it all became too much and navigating through to different areas with Willow in her wheelchair was tough going. Viv knew how much Willow would have loved the experience if it could have been more tailored to her needs and this was where the idea for Willowfest was born.
When I saw that message from Viv a few weeks ago it was with a mixture of delight for Willow and nervous trepidation that there was only a time-frame of 6 weeks until the date of the festival. As well as me being a seasoned festival attendee, I also have a number of friends within the business, all of whom metaphorically (and probably literally) ‘spat out their tea’ when I told them that Viv and her Make-A-Wish co-ordinator were going to put on a one day festival for about 200 people … in less than a month and a half’s time.
So from that moment, a frantic scramble towards the festival finish line began. Every bit of respect to Viv, who seemed to unflappably know that it would all come together on the day and that she would be able to provide her eldest daughter with the special, one-of-a-kind, magical experience that she deserved. Viv clearly had a vision of how this was going to work and she stopped at nothing to ensure that all of the festival must-haves were covered. From hand-making (with a little help from some friends) what seemed like miles and miles of gorgeous bunting, to finding the perfect location, to sourcing the best types of festival food and snacks, booking the bands and entertainment and organising set-up and post-festival break-down teams, Make-A-Wish and Viv worked tirelessly to make it happen.
The day before the festival was beautifully bright and sunny and I went across to the venue, a glorious old barn on a country estate usually used for wedding celebrations. When we arrived it looked as if the place was set up for some kind of business conference but again, with Viv’s vision, and lots of helping hands all pulling together, it was soon transformed into the wonderland of Willowfest. A huge main barn, all quirkily and uniquely decorated, 2 quiet/low arousal teepees further away from the main barn for those who might need a break from the hustle and bustle, flags, signposts, a comfy chill-out zone within the main barn. If I didn’t know, I would have said that this was a culmination of at least 6 months’ preparation, not the 6 weeks that had elapsed!
Unfortunately, on the morning of Willowfest, the good spell of weather broke and the forecast for the day ahead looked to be constant, heavy rain. Like every decent festival, the weather certainly didn’t dampen anyone’s spirits and arriving at the festival just after the start time of 2pm, it was clear that there had been a whole lot more preparing going on that morning! Food stalls, a craft marquee (making a miniature model of Willowfest using recycled materials), unlimited candy-floss, popcorn, ice-cream and sweets (‘festival rules’ time for the children – and the adults!), a huge illuminated ‘W’, a dressing up/festival makeover station, glitter stall and so much more, all coming together to create a truly authentic and bespoke festival for Willow.
The birthday girl arrived in style in a stretch limo before coming into the main barn area, rocking her festival style of turquoise faux-fur jacket and gold boots with flashing lights. Initially, Willow looked a little reserved and unsure of what exactly was going on, but once she settled into proceedings and took VIP position front middle of the stage there were smiles and use of sign language to sign ‘party’ and give everything the ‘thumbs up’. As soon as the bands started Willow was lost within the melodies and beats, dancing in her wheelchair non-stop alongside a group of her friends and family. Some of the bands covered a few of Willow’s favourite songs which her sister Ember had been compiling in preparation, playing a selection of songs for Willow to listen to – if it got Willow dancing it made the playlist!
Each of the bands and performers did their best to play their most memorable and crowd-pleasing festival sets. From the opening threesome Alice, Jessica and Kara through to Willowfest headliners Magpie, it was plain to hear that all had given lots of thought and consideration for Willow’s musical preferences. The two solo performers Sheya Lilly and Nye both gave their own spin to a few of Willow’s particular favourites such as George Ezra and Ed Sheeran. Sour Kix (with a 13 year old frontwoman with the poise and confidence of someone twice her age) nailed their set, bringing gifts of cuddly monkey toys for Willow and her friends, and handing out egg-shakers so that everyone could join in when they played Parklife (or as they announced it “one for the parents”). Magpie’s closing set was a resounding, celebratory explosion of a mix of original material and perfectly picked covers. I particularly enjoyed their take on Alice Merton’s No Roots and the moment during their final song Pain by War on Drugs when a silk-fan dancer sprung out of nowhere to gasps of delight. I don’t know whether Willow or the band were more surprised!
At the end of the evening, after an emotional thank you speech from Viv, there were more helping hands all working together to pack this amazing one day wonder away. For me, the stand out moments were the joy of seeing Willow dancing all afternoon long and feeling the love and support pouring out into that space. It’s amazing what friends and family can do for each other, and the Make-A-Wish Foundation enabled everybody to donate time, services and love to make this a truly magical and memorable day. Through Willowfest I learnt that the power of togetherness can achieve amazing results, I learnt never to take for granted all of the things that I am able to do with my children and that at Willowfest, the queue for battered halloumi was a mere 9 minutes.
There are many more children, with similar stories to Willow, whose wishes could be granted through donations to Make-A-Wish. Willow’s story is here where you can still donate to help other wishes come true.’
Words by Mary Long, photos by tonyjupp.com and a big thank you to Viv for letting us share Willow’s story