Once again we're doing something crazy for this awesome charity.  We love to be able to support the charity that helps our friend's family so much since receiving their diagnosis. We need to raise £595 minimum each for the event.

Ella (12) and Chloe (5) suffer from Cockayne Syndrome. They have a brother, Alex (8) who is not affected (but may be a carrier) and also now have a new baby sister, Mia, who is not affected but is a carrier.

Cockayne Syndrome is a very rare, recessive genetic syndrome, which means the mother and father carry the mutated gene (ERRC6) and have passed it on to Ella and Chloe. Every pregnancy has a 1 in 4 chance the child will be affected. It is a premature ageing disorder where the DNA can't repair itself and leads to a shortened life expectancy (average 12 years). There is no cure.