‘When I look at him, I think how can you be so ill?’

Sue Price, left, and Sue Clarke with some of the donated raffle prizes at Tesco in Tring

Sue Clarke, who has worked at Tescos in Tring for 15 years, was blown away by the support from the store’s staff after her two-year-old grandson Roman James was diagnosed with Niemann-Pick disease type C (NP-C) in April last year.

NP-C is a rare inherited metabolic condition, which means Roman cannot process cholesterol properly. Excessive amounts accumulate in his body, causing neurological regression and irreversible damage.

Symptoms of the fatal condition differ from child to child, but can include an enlarged spleen and liver, prolonged jaundice, progressive loss of motor skills, difficulty walking, slurred speech, swallowing problems, seizures and dementia – meaning it is often called ‘childhood Alzheimer’s’.

Sue, who lives with husband Phil in Carrington Place, Tring, said: “When I look at him, I think ‘how can you be so ill? He’s such a bright little boy.

“It’s already affected his ability to walk and talk, and soon he won’t be able to swallow.

“There are only around 1,000 people in the world that have it, but four of those are in Milton Keynes.”

In support of their friend, cashier Sue Price and her fellow colleagues took it upon themselves to arrange a tombola for shoppers just after Christmas, which saw staff donate their unwanted Christmas gifts.

The event raised £543 and now the most recent raffle saw Sue’s fellow cashier Angela Hurley visit businesses around Tring to ask for prize donations, where she gathered together an impressive two trollies worth.

The raffle was drawn last week and raised a total of £226 – so with the tombola total and an extra £108 in donations means the total £877 rasied will be split between Niemann Pick UK and the Hope For Hollie Foundation, which is a Milton-Keynes based charity set up by the mother of fellow MP-C sufferer Hollie Carter.

Sue said: “I just want to thank Sue, Angie and all those who have helped and donated because they have been so generous.”

Roman lives with his parents Ben James (Sue’s son) and Scarlett Rojek-Smith in Leighton Buzzard,

The family’s local community has rallied round to enable them take Roman on holiday to Disneyland Florida and more than £10,000 has been raised to date.

For more news and updates, search ‘Roman James’ Florida Fund’ on Facebook.