11 year old Ethan Jones has a very rare condition called Ring Chromosone 14. There are just 40 to 60 cases worldwide. It causes epilepsy, respiratory problems and global delay. It means Ethan needs care around the clock.
Children's Hospice South West helps families like Ethan's. Its three hospices in the region offer care for children who have illnesses which mean they wil die before reaching adulthood. It is supported by the charity, Together for Short Lives.
For more information on Together for Short Lives click here
More top news
South West Water to send out mobile drinking water units as water supplies in St Blazey still affected following two burst water mains.
Film and theatre actor Alex Giannini - star of 'Legend' and 'Elizabeth: The Golden Age' has died ahead of a theatre performance in Plymouth.
Large charities could be forced to sign up to a new watchdog under changes being introduced by the Government to tackle rogue fundraisers.