IMAGINE waking up one day to find that your skin has hardened.

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Your skin growing extra layer upon layer to the point where you are unable to bend or move any of your limbs.

For Tamara Kennedy’s mother, Trish Rainbow-Noack, this is her new reality, as her body slowly turns to stone.

Almost two years ago she was diagnosed with a debilitating disease called scleroderma.

It causes hardening of the skin and affects the internal organs like the heart, liver and kidneys.

It is a life-threatening disease, for which there is no cure.

Last year, Tamara and her family started a legacy to raise awareness and money for ongoing research to hopefully find a cure, they put on their walking shoes and walked over 470km (500,000 steps) from Narellan to Ariah Park (a little town in the Riverina) raising over $30,000.

They have just begun on this year’s trip, and are on their way to Port Stephens.

They have raised the bar, and are in the process of walking further than before with 500km in two weeks from Port Macquarie to Narellan from 16 June – 29 June.

Tamara Kennedy told News Of The Area, “It will be an epic journey following the coastline, we will be climbing hills like we have never climbed before.”

“It’s going to be an incredibly difficult walk but we are up for the challenge.”

To put their trip into perspective, that is almost 40kms every day for 14 days.

The equivalent of walking a marathon every day for two weeks.

No easy feat, but it is nothing compared to what people living with Scleroderma go through every single day.

If you’d like to catch Tamara and her team along their journey, you can find them in the following local locations.

Bulahdelah on June 20, and meeting up with locals that night at Plough Inn Hotel.

Hawks Nest/Tea Gardens on the June 21 and meeting up with locals at Tea Gardens Hotel before going across the Nelson Bay for 22 June.

From there, Tamara and her team will walk from Nelson Bay, through Williamtown to Newcastle.

If you would like to find out further information, you can contact the team on 0458 108 182, email them at: scleroderma.500k@gmail.com or follow them on Facebook at  “500,000 Steps for Scleroderma”.

Tamara told News Of The Area, “Our mission for this walk is to raise awareness about Scleroderma, every person we engage along the way is one more person who now knows about this horrible disease.”

‘We are amazed at how these local communities along the way have embraced what we are doing and how generous they have been.”

“Every dollar we raise along the way is going towards Scleroderma research, and hopefully one day they will find a cure,” she said.