Steve and I are hoping to help raise funds for adorable little baby Charlie Wagstaff who was born with a rare genetic disorder called Congenital Hypoventilation Syndrome (CCHS) which means he stops breathing every time he falls asleep and sometimes when he cries or even when he concentrates. We and our staff at our pub were all looking forward to meeting Sophie and Chris's baby and were heartbroken to hear of Charlies condition and can only imagine the struggles his Mum and Dad have been through. It is so rare that only 1000 people in the world have been diagnosed with this lifelong and life threatening condition, which has completely turned his Mum and Dad's life around. Charlie spent four Months in hospital before coming home with lots of equipment and carers who watch over him every night. He wears a mask attached to a ventilator every time he goes to sleep - his life support machine and his oxygen and carbon dioxide levels also have to be closely monitored to keep him safe. See links to understand more about this condition.

CCHS https://www.cchsuk.org/

& #MovingTowardACure.

CCHS Foundation cchsnetwork.org

Charlies mask is starting to cause him facial deformities, so any money raised will go towards a bespoke mask which will hopefully allow his face to develop properly over the next 6 Months. As babies grow so fast he will require a new one every 6 Months. A Doctor from Denmark will need to fly over to England for the bespoke fitting. He will need a clinical room at a hospital and the local NHS are able to provide the room and whatever else is required but it needs to be paid for. We are also holding a Neil Diamond tribute event at our Pub and hope to raise as much as we can there. Thanks every one! Angie x