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Butterfly Kisses
Charity Ball

by Melanie Saavedra

Melanie, Jose and Emilio Saavedra

On the 23rd April 2013, my world was turned upside down when I found Emilio in bed unable to move and speak. After being blue-lighted to hospital and what seemed like an eternity, Emilio was diagnosed with NF1. My world came crashing down and life changed in a split second, the days became very dark and I couldn’t see a future at all.

Where we live community spirit is amazing and some of the Mum’s from school wanted to show their support so organised a “fun day” to raise money and awareness of NF as everyone was touched by Emilio’s diagnosis. The day was a huge success and we raised over £1,000 for The Neuro Foundation (the former name of Nerve Tumours UK). During this day I mentioned to a friend that I would love to host a Charity Ball as us Mums need a night out every once in a while! I didn’t think much more of it until my friend asked if I was going to get planning and actually host it. So, the “ball” was born and the name came from Fran my dear friend who visited Emilio in hospital and taught him how to give “Butterfly Kisses” with his long eyelashes fluttering on your cheek.

The rest they say is history…5 years on we have hosted 5 charity ball’s and they are now the “must go to” event in the local calendar. As soon as I post the date the tickets fly out and all 220 seats will be taken with a waitlist just in case! I use the ball as a platform to raise awareness of Emilio’s condition and how this can change from one person to another and also to raise the much-needed funds for Nerve Tumours UK. The help and support from the charity is second to none and it has made this journey much easier having a team to speak to whenever you need them.

It isn’t easy securing sponsorship and I have begged, borrowed and pleaded with friends and strangers to use their apartments/houses/boats/planes etc to auction off. I have a team of “Ball Planners” and they contact businesses on my behalf to ask for prizes and funds so the ball has the wow factor on a budget!

Using Social Media has been key to this journey and it helps that Emilio has the charm factor and with a flutter of his eye lashes he melts hearts. The town has really taken onboard Emilio’s journey, so we post the good and the bad, the numerous hospital stays and surgeries along with the recovery and then his milestones to show what NF means to Emilio.
Hosting the ball has given me a focus, so that rather than searching the Internet reading everything I can find on NF1, I have channelled my energy into raising the profile of Emilio’s condition in the hope that one day a cure will be found. In the meantime, if I can raise as much money as possible to help bring NF1 into the forefront then that is what I will do.

In the 5 years, I have hosted 1,148 guests and they have helped raise over £150,000! This number is massive as it is a collective total of a whole community coming together for Emilio and NF1. From running the London Marathon to Ride100, local runs, head shaves, bake sales and so much more, NF has really touched the lives and hearts of everyone that surrounds us. For this I will always be truly grateful and just shows the power of positivity and turning something so negative around. I know this doesn’t change Emilio’s diagnosis but it has changed my outlook for Emilio as he loves attending the ball, wearing his tux and singing a song. I am so proud of who he is and how he deals with his condition, that it is impossible not to be swept away in his world!

Ball number 6 is in the early planning stages so watch this space….