by Anna Lindsay
BBC News Online, Berkshire
While most families enjoyed Christmas morning last year, Jane and Michael Gates woke to their first day without their nine-year-old son, Sebastian.
Sebastian helped raise £26,000 for a children's cancer ward in Oxford
The brave schoolboy died of cancer on Christmas Eve 2003, after fighting the disease for two-and-a-half years.
On Sunday, their grief was worsened when thieves stole a lantern from Sebastian's grave - kept alight because he feared the dark - near Ascot, Berks.
"To think someone has been so callous is terrible," Mrs Gates said.
"For this to happen after his death - and to think this person could be in our community - is a tremendous travesty.
"During the course of his illness Sebastian battled with tremendous courage. He coped with every aspect of his illness but he just didn't like the dark," she told BBC News Online.
Sebastian fought his illness with incredible strength, she said.
"He never considered the unfairness of his illness - he wasn't bitter in any way. He never felt that he would die or that his illness would beat him.
'Grave still too new'
"Sebastian was a shining light and an inspiration to many people.
"The fact that they have stolen his lantern will not diminish that light - if they had been that desperate for money I would have given it to them."
The thieves took the lantern despite a plaque making it clear the grave belonged to a child.
Mrs Gates said: "His grave is still too new to have a headstone but there was a plaque on there saying his age - so they would have known."
Many people in the local community have offered to buy a replacement lantern.
Mrs Gates hopes people will instead give to an appeal that her son launched before his death, to build a holiday home for terminally ill children and their families.
"We hope to fulfil this wish with the support of other families who have been bereaved," she said.
"We have a lot of support. Sebastian was very well known in our community - £26,000 he helped raise was used to refurbish the children's cancer ward at Oxford's John Radcliffe Hospital, where he had most of his treatment.
"Unfortunately the work didn't start until a few weeks after Sebastian died.
"We're very proud of our son and the way in which he conducted himself during that time."