EVERY hour is precious – just ask the parents of five-year-old McKenzie Kemish.

McKenzie is literally one of a kind, having developed a unique genetic condition that has stifled his brave battle against a rare and aggressive form of cancer.

His is the only known case of its type in the world – and has left doctors unable to say what the future will hold for him.

His parents, John and Amberley, of Totton, have taken part in an event held to boost awareness of the Rainbow Trust Children’s Charity as well as encouraging people to raise funds for the organisation.

The Rainbow Trust Big Tea was staged in support of The Big Hour campaign, which coincides with the clocks going back at the weekend.

Daily Echo:

McKenzie Kemish with mum Amberley

Rainbow bosses are hoping people will make use of the extra hour by baking items that can be sold in aid of the charity.

McKenzie was only two years old when a lump on his neck turned out to be a tumour next to vital nerves and arteries.

Unable to risk surgery, doctors resorted to chemotherapy. But the treatment triggered a rare syndrome called atypical HUS, a disease that destroys red blood cells and causes kidney failure in children.

McKenzie was given only a 40 per cent chance of survival. He has had treatment to protect his kidneys but will need a transplant.

Amberley said: “A lot of McKenzie’s friends on the ward have passed away. We’re lucky to have made it this far. We just don’t know what tomorrow will bring.”

The Rainbow Trust has provided John and Amberley with a family support worker who gives them emotional support as well as looking after their other children when McKenzie is in hospital.

Now the family has decided to “give something back” by raising funds for the charity.

Amberley added: “The biggest support for us has come from the Rainbow Trust and we are going to try our hardest.”

Held at the New Inn, Totton, the Big Tea featured prizes, a cake sale and the chance to win a giant teddy.