Natalie Tregoning, who turns five next month, captured the hearts of Justin O'Shannassy and Martin Blake who met ``Natty'' and her parents Mark and Sue whilst working at Queenstown to help reopen the West Coast Wilderness Railway.

Natty was born with Treacher Collins syndrome where a rare genetic defect prevented the bones and muscles in her face from growing correctly in the womb.

When she was one-week old she was given a tracheotomy to help her to breathe, and has already undergone a number of surgeries, including fat injections in her cheeks.

It is believed Natty is one of four Tasmanians to have the condition.

Mr Tregoning said his only child was unable to hear or talk but would soon receive massive surgery that will extend her small jaw, allowing her to eat properly and have the tracheotomy removed.

Natty will also receive a bone anchored hearing aid to allow her to hear the outside world. 

Mr Tregoning said she was a mischievous little girl and full of life. ``She is a a boisterous, inquisitive, adorable little princess with a good sense of humour . . . she loves Minnie Mouse, and she loves demolishing or dismantling things,'' he said.

``We are convinced she is going to be a weight lifting ballerina, or a demolition engineer . . . she certainly keeps us on our toes.''

When the couple learnt that Mr O'Shannassy and Mr Blake wanted to help Natty they were overwhelmed.

``There are a lot more people out there more worthy than us,'' Mrs Tregoning said.

``We cried.  You just don't expect this - it is fantastic that people want to help our daughter.

``She gets a bit frustrated sometimes but she is a normal kid ... people with Collins live very normal lives, they can be doctors, nurses, anything that they put their heart into, just like anyone else.''

Mr O'Shannassy and Mr Blake will begin their eight day walk on June 1. 

For more information visit the Facebook page Walk for Natty or donate to Natty's Trust Fund at the Queenstown branch of Bendigo Bank: BSB 633000. Account: 151578382.