Imagine waking up one day to find that your skin has thickened and hardened.
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, passing through Yass on their way.
Mrs Rainbow-Noack’s husband, daughter and son-in-law will set out from Mount Annan on Friday to begin their 13 day trek.
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 walk was first suggested as a joke, which became a reality. “My Dad started on a bit of a fitness journey, and we were sort of competing with each other,” says Mrs Kennedy.
At an engagement party, he mentioned that he was thinking of doing a really long walk, and Mrs Kennedy thought it was a great idea.
She saw the walk as a fantastic opportunity to raise awareness for the scleroderma.
They fixed on Ariah Park because of family connections to the region. Mrs Kennedy’s grandparents were from the town, and they still have family there.
“When we were looking at places to go that were significant to our family, that came into my dad’s mind,” she said.
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.
There’s a glimmer of hope at the end of the walk, Mrs Rainbow-Noack has been accepted into a stem cell treatment trial, which will begin at the end of the walk.
Their departure is imminent, the family plan to leave from Mount Annon on Friday May 26.
The family will plans to reach Yass on June 2, where they will be celebrating both Mr Noack and Mr Kennedy’s birthdays.