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Many of you know how we nearly lost JoJo just after she was
born, but most of you may not know the reason for it, which we were faced with a few weeks later.
Just as we thought we were over the worst, we found we had a new hurdle to face when the doctors told us they had discovered that JoJo has a rare genetic disorder.

It's called Prader-Willi-Syndrome and affects 1:15,000 births. It's a totally random and spontaneous occurrence - it could happen to anyone, and it happened to be us. After everything we had already been through, it was very hard to take onboard that JoJo would now have to face a lifetime of difficulties;
Cognitive, physical, learning and behavioural difficulties and most encompassing, she would always feel hungry. With PWS the part of the brain which tells us we are full simply doesn't work, so every day she would experience an untreatable, insatiable hunger. Ironically, those with PWS burn calories much slower than a typical person so she will always have to be on a strict diet of less than half the calories of her peers. She will most likely never lead a fully independent life. Best of all, there is no cure.

This was what we faced 6 weeks in to JoJo arriving in the world, and it was a lot to take in. There were many tears and fears, but in the weeks that came we decided that this wasn't going to beat us and we realised that PWS isn't what defines JoJo, it is just a small part of her.
It isn't what we planned, and it's something we are dealing with each day as it comes. We think about it now when we are teaching her to feed properly & do exercises to help her low-tone muscles. We'll have to think about it in the future every day when we have our meals. We'll have to think about it when we go on holiday, or she is invited to a party, or is at nursery and at school. We won't be stuffing our faces with chocolate at Christmas, or any other time (well, maybe in secret occasionally..) We'll be planning days out to the max. Our lives won't be as we had planned, but they won't be worse - just different.  

What we do know is that she is the loveliest, happiest and toughest little lady on the planet. She has brought us closer as a family and made us realise that we really don't need to sweat the small stuff. Every day we say a giant thank you for the very fact she is here, and her huge smile every morning puts the world into perspective. We know the planet has amazing things in store for her, and that we will have the support of our family and friends throughout it all - as we already have.

Although PWS is rare, there is constant research going on all over the world into discovering more about how that tiny piece of missing genetic material affects so many aspects of a person. The shining hope for the future is that the hope for a cure isn't impossible - and that's why charities like PWSA UK are so important. They have already provided us with fantastic support since we got JoJo's diagnosis, and all money raised for them will go towards making a brighter and more independent life for our amazing children. 
We feel lucky to live in a world where JoJo's future can, and will be as amazing as we want to make it - and we are going to make sure it is one that is filled with love, smiles, unicorns, magic and happiness.

We are planning a walk along our beautiful beaches on Sunday 8th May 2016 at 11am to
raise awareness and money for PWSA - and we would love you all to join us. Look out for blue & pink balloons at Putsborough car park - come and sign in, grab a PWS-friendly snack & drink and we'd love you to bring a picnic for a beach lunch after the walk. 

Any donations are hugely and gratefully received  - every penny donated from now until the walk in May will be going to PWSA UK and we hope it will be a chance to get a lovely big group of people together to enjoy our amazing beaches and stretch our legs whilst raising money and awareness for a very special cause!

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