SUDEP Action

Making every epilepsy death count
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Rosie’s Ball raises awareness and £15,500 for SUDEP Action


Rosie had always wanted a big 21st Birthday Party and since we all knew just how much she liked to party it seemed an appropriate way for us to celebrate her life whilst at the same time doing something positive in order to try and address the  complete lack of awareness surrounding the cause of Rosie’s death.  

We came together as a family and settled on the idea of making the ball black tie in the hope that it would cater for everybody, not just friends and relations but also people who did not really know Rose but who simply wanted to support us as a family. We also believed that a single large one-off type event would provide the greatest opportunity to raise a decent amount of money which could then be used to fund further research into this little understood phenomenon and in the hope that other lives may be saved

We set a date for Rosie’s Ball that we knew would be convenient for many and arranged for the ball to start at 6.30pm prompt, with champagne on arrival followed by dinner at 7pm. We made the decision to start early so people could eat and then we could get the auction completed before the evening guests arrived. It also encouraged people to start relaxing early on and this ensured that the vast majority stayed on late into the evening. The limiting factor of course was space since we were using our local St Mary Bourne village hall. However we managed to offer a variety of table sizes for sale to ensure that we had 145 guests for the reception, dinner and auction and then a further 30 people for the after-party disco.

Quite honestly, we were amazed at the generosity of so many people for contributing and also then bidding for the auction and raffle prizes and it was this part of the evening that generated the most amount of money. We were also pleased to have Katie Piper come along and support despite doing so much of her own charity work and we were honored that she was able to find the time to attend and enjoy this event.

The music throughout the evening was excellent and was  provided by a local band called the Rookies who are made up of parents from our children’s school and who chose to perform on the night for free. A band would normally cost anywhere between £300 and £800 so savings such as this are fairly significant and can really help increase the amount of money raised

The ball ended about 1am and we were pretty exhausted by the end but also relieved that the event itself had been such a success. More importantly, and despite Rosie not being there, we were pleased that we felt that we had been able to celebrate her in such a positive way. Whilst as a family it was sometimes very sad, it was in many ways also a hugely enjoyable event since we were able to hear so many stories about Rose which at the time we had remained blissfully unaware of.

Looking back at the event we are incredibly grateful for the support of all our immediate family and a few close friends who helped with the planning, execution (and tidying up!) but especially my good friend Mills. This event would probably never have even got off the floor if it wasn’t for the contribution of Mills. After losing a loved one they often say that your circle of friends can change and this is so true - Mills is somebody who has become a great friend to me and my family since Rose passed away.

We as a family will continue to try and raise money for the charity and would always be happy to help anybody else who wishes to consider such an event. If you are considering organizing a ball for SUDEP Action, all I can say is don’t be afraid and be sure to try and make it as fun as possible. Also try to engage some close friends who may bring some very different skill-sets to the table and whom you can count on to help you and set realistic goals and expectations.