However, Mrs Heslop, of Lawrence, believed that could change, because a lot of research was being done into Sanfilippo syndrome.
Drug-buying agency Pharmac is holding forums around the country to get feedback from the general public about what its priorities should be when determining how to use funding.
Mrs Heslop was one of more than 50 people who attended the Dunedin forum yesterday at Otago Museum.
It would be ''terrible to think'' that if a drug was available, Cody might not be able to have it because of cost, she said after the forum.
Mrs Heslop said she pays about $800 a month for a trial drug, from overseas, to ease her son's symptoms, which she would not expect Pharmac to fund. Children with the rare syndrome have a life expectancy of mid to late teens.
Participants considered the issues in groups before reporting back to the forum. Mrs Heslop told the group she was ''just a mum'', and found it difficult to contemplate a situation where a life-saving drug might not be funded.
Pharmac chairman Stuart McLauchlan, of Dunedin, was pleased with the high turnout. There was a good mix of medical professionals and members of the general public, he said.
The issues raised yesterday mirrored discussions held at board meetings, he said.
