My son Ross and I are trying to generate awareness of the problems Demelza House has and how vital it is it stays open to help families like ourselves.

Demelza House is based in Sittingbourne and is a respite home for terminally-ill children. It is the only charity-based respite home in the South East but is facing financial problems to keep open.

Ross was born three years ago and, soon afterwards, it became apparent not all was well. He is profoundly deaf, visually impaired and has epilepsy and cerebral palsy.

He also has a severe learning disability. I, as his mother, care for him continuously. Ross is unable to do anything for himself. But he is one of the luckier ones at Demelza - he is bright, full of giggles and happy in his own little world.

He is not in pain or suffering and is unaware of his difficulties. Demelza House is able to offer me a break from his 24-hour care and facilities are there for me to stay or return home to my other son, who is five.

The staff at Demelza deserve a break from worrying about how to fund the next weekend they can stay open rather than closing on a Friday night. This is a very sad position to be in when a child is dying and needs the care, attention and help Demelza House can offer if fully open. At present, it is only able to open Monday to Friday because of lack of funds.

A lot of families here in East Sussex use Demelza House and, hopefully, will be able to in the future.

If you would like to help me generate more awareness of Demelza House, please contact me there (call 01795 843843) or by email (ALISONVAL1@aol.com)

-Alison Valentine, Littlewood Lane, Buxted