"I want to get an idea of just how big the situation may be before we investigate whether we do something either through legislation or through the process or signing up.
"It's a bit of a rock and a hard place because Tim obviously would like to get at his money but the parameters of KiwiSaver don't suit him."
Fairhall is 39 and the average age of death for people with his condition in New Zealand is 57.
Fairhall lives in a trust house in Auckland and has worked two half-days a week at Countdown for 15 years.
Joan Fairhall enrolled him in KiwiSaver 10 years ago, thinking she was helping him save for his retirement, which she says would be in his 40s.
"This is Tim's money, he earned it, he saved it. He saved it with a particular goal in mind. It's important that he has a goal to look forward to. Tim is very hung up on that," she told the Weekend Herald.
KiwiSaver has a number of opt-out clauses but Fairhall doesn't meet any of them.
"The people who dreamed up KiwiSaver ... they didn't think about people who age prematurely and won't reach the age of 65, let alone work beyond their mid-40s," his mother said.
She has written to Faafoi and will make a submission next month to a select committee considering a bill making changes to tax laws.
Blair Vernon, managing director of AMP which is Fairhall's provider, believes KiwiSaver's design never contemplated circumstances like Fairhall's and the company's hands are tied under current law.
"There is nothing within the framework of Kiwisaver that allows us to grant access to funds. That's strictly controlled by the trustee, not by us," he said.
"I think there needs to be some mechanism for recourse with certain situations that would have to be considered on a case by case basis."
