Julian Thompson to create oasis for Duchenne sufferers

James Thompson is one of the lucky ones.

The 11-year-old suffers from Duchenne - a form of muscular dystrophy that will paralyse him and ultimately shorten his life but even though he requires full-time care, he has been able to see various parts of the world with his family.

Most families with children who suffer from Duchenne can't find or afford a place that caters for their family holidays, with carers and other accessibility requirements.

It's a difficulty of which James' father, Julian, is acutely aware and one he hopes to change with a mega fundraising bike ride - Tour Duchenne.

The first Tour Duchenne was held in 2009 and this year's, running from Airlie Beach to the Gold Coast, will be the longest one yet after rides between Sydney and Melbourne, Brisbane and Sydney, and Adelaide and Melbourne.

In the past most of the money raised has gone towards research to try and find a cure for the disease but Thompson said he wanted to give something more immediately tangible for families of sufferers.

"It'll be like an oasis, a utopian oasis in the hinterland where kids can go and take surf lessons and go scuba diving and dive with the dolphins and boys can get cared for and Mum and Dad can get whisked away and get a couple of days in the hotel," he said.

"Parents are full-time carers so it basically takes that normality of family life away."