TICKET SALES - https://www.ticketsource.co.uk/date/406500
JUSTGIVING donations -https://www.justgiving.com/fundraising/undertheseapws
AHOY me hearties, welcome to 'Under the Sea' - an ocean-themed evening event set in one of BAYA Hire's magical domes, full of DJ's, drinks & dancing set in the beautiful Combas Farm between Croyde and Putsborough.
All proceeds from this night are being raised for the Foundation for Prader Willi Research. PWS is a condition which has affected Josh's little family hugely since the arrival of his little ball of fluff, JoJo.
When JoJo was born in 2015 she quickly ran into some troubles. Unbeknown to us in her first night in the world, she ingested milk into her lungs. This caused pulmonary hypertension, a scary condition for a tiny tinker.
She was whisked from Barnstaple hospital to Plymouth NICU unit, where she got rapidly worse. An incredible paramedic team in London raced to her rescue as the last-chance-saloon & she was airlifted to Great Ormond Street hospital to undergo a huge life-saving operation. JoJo beat all the odds and was moved on to Bristol NICU unit, and then finally back to Barnstaple. This deeply stressful time took around 6-7 weeks but finally, we were able to take her home for the first time.
Since coming home, however, it still has'nt been plain sailing. A few weeks later, JoJo was diagnosed with Prader Willi Syndrome, a rare genetic condition that affects around 1:20,000 births.
It is a totally random event and could happen to anyone, of any age, and any lifestyle. PWS was the cause of JoJo's low muscle tone (which started the whole hospital touring business) and also inhibits her growth, physical ability, and possible learning difficulties amongst other things. Ultimately what PWS is famous for, or should I say infamous for, is that at some point it will affect her ability to feel full - she will feel hungry, 24 hours a day. Imagine that.
Obviously, this has changed the way we live our day to day lives. Diet and exercise are now of ultimate importance as JoJo has to eat super healthily - no sugar, nothing processed, just wholesome, whole foods as her metabolism is much slower than ours. Put it this way, if JoJo was to eat one sugar coated jam doughnut it would be like you eating 10. And she wouldn't know when to stop.
The ray of hope for JoJo's future is that research is bringing potential cures to help control the symptoms of PWS. All money raised for FPWR goes towards this life-changing research and so we have decided to put on this event.
The ticketed evening event will be starting at 7.30pm until midnight. There will be food by Stoned Pizzas, bar by Mojito Bros, Innate DJ and Nixon bringing the tunes and also the lovely people from The Remarkable Photobooth Company, all encased under our geo-tastic BAYA Dome and sail with an Under the Sea theme - so get some marine-inspired fancy dress sorted and be willing to dance the night away.
When the tickets are gone they are gone and it will mean we are at full capacity so be sure to get in early to avoid disappointment.
We have been struggling to find ways to support this great charity so hopefully, this will be the first of an annual event.
Combas Farm, Meadow Lane, Croyde, North Devon, Ex33 1PH
Click on the link to get your tickets - https://www.ticketsource.co.uk/date/406500
And if you can't make it but would like to donate then visit our justgiving page here - https://www.justgiving.com/fundraising/undertheseapws