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