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
Emergency services say they will working long into the night to deal with a fire that began in a music shop near the centre of Exeter.
Leon Dexter was set upon by the birds in Ilfracombe in the latest in a series of attacks by seagulls in our region.
Emergency services are tackling the fire on Sidwell Street near the centre of Exeter.