Your limbs are seizing  – you can barely even walk. 

That is the reality Patricia Rainbow-Noack has faced every morning since her shock scleroderma diagnoses. 

A life-threatening disease with no cure, scleroderma affects the internal organs and causes a hardening of the skin. 

Mrs Rainbow-Noack’s family was thrown into a world of confusion after her 2016 diagnosis, trying to combat a disease which affects less than 5000 people in Australia, with little medical knowledge surrounding its cause. 

Now, her family is fighting back, raising awareness and fundraising for the mysterious disease by walking 470 kilometres from Sydney to Ariah Park. 

Mrs Rainbow-Noack’s daughter, Tamara Kennedy, has helplessly watched her mother decline right before her eyes. 

“My mum is the one that holds the whole family together, she’s the rock and the backbone,” Mrs Kennedy said. 

“You expect your parents to be there with you for your entire life and to hear they may not have long left is very difficult.” 

The MIA holds a special place in the family’s heart, with Mrs Kennedy’s mother from Temora and her father’s from Ariah Park. 

“My dad used to take my mum for a true outback holiday in Ariah Park when they first started dating,” Mrs Kennedy said. 

“It was a place they would use to escape and to get away from the bustling Sydney life.” 

Mrs Kennedy said the walk has given her father purpose, after a long journey as the family’s biggest support. 

“He’s 58 years old and is walking 20 kilometres a day on his own in preparation for this,” Mrs Kennedy said. 

“When he’s out there walking it gives him a chance to process and get his head right.” 

Mrs Kennedy said her mother is overwhelmed and proud of the family’s efforts. 

“Mums fight is teaching us to make the most of each day and never give up,” Mrs Kennedy said. 

Mrs Kennedy, her husband and father will arrive in Temora on June 6 and in Ariah Park on June 7. To donate head to the 500,000 Steps for Scleroderma GoFundMe page.