"Inclusion Body Myositis (IBM) is a condition that causes muscles to become thin and weak," said Ms Staal.

"The symptoms normally start in middle to late life and it is the most common muscle disease diagnosed after the age of 50 however, I have been told that I started showing symptoms much earlier than normal."

Siggy met her now good friend Pam, who will be kayaking laps for her at the what is now known as the Father O'Reilly Op Shop and the pair went on to work at the local Big W together.

"I have known Pam for more than ten years now, we have worked together at the Singleton Big W for quite some time which has always been a pleasure," said Ms Staal.

"I am so grateful to have such an amazing friend who is willing to do this for me. My son Rory also plans to kayak alongside her for a day or two when the venture takes off," she added.

IBM is classified along with polymyositis, dermatomyositis, and autoimmune necrotising myopathy as one of the idiopathic inflammatory myopathies (a group of disorders characterised by inflammation of the skeletal muscle).

"Some of the initial symptoms I had were random falls, levels of fatigue and weakness in my legs.

"Now I struggle to get up and down from certain heights, I struggle to grip things such a pen when writing, even swallowing food can be difficult" she added.

The disorder also takes a mental toll as Ms Staal now must be aware of how easily accessible places or venues are. "I have to plan ahead depending on where I am going, I am lucky to have my son Rory who I rely on for support."

Ms Staal doesn't know of anyone else within Singleton who has been diagnosed with IBM however, she hopes that Pam's fundraiser can shed a light on the uncommon disease.

"I had no idea what IBM was before I was diagnosed with it and I don't know of anyone in Singleton who has it either.

It can often be misdiagnosed as simply 'ageing', but it most definitely something else," she added.

Ms Staal attends a regular IBM meeting held in Ourimbah every few weeks and has met people suffering from IBM on online group forums.

"My sister and I purchased kayaks not long ago and I grew up in Spears Point," said Pam Hall who will be conquering the kayak journey.

"It would be my grandmothers 120th birthday on the 20th of October and I want to honour her through kayaking around our home area however my nephew suggested that I push to raise funds for something meaningful.

"I have known Siggy for many years and not many people know about her disease which I hope to raise some funds and awareness for."

The kayaking journey is set to take place on October 20, 2020 and Pamela hopes to raise much needed funds and awareness for the incurable disease.

Ms Staal is extremely grateful for the team of nurses and doctors at the Singleton Hospital who have been treating her with intravenous immunoglobulin (IVIg) every three weeks.

Intravenous immunoglobulin (IVIg) is a solution of human plasma proteins and in particular IgG antibodies with a broad spectrum of antibody activity.

IVIg is used for patients who need replacement of antibodies and also for autoimmune disorders.

"I and many others with auto immune diseases rely on blood donations, so if you can donate blood please do! The nurses at the local hospital have been absolutely wonderful to me since the beginning of my journey with IBM."

Singleton Big W have agreed to jump on board and support the IBM initiative.

To make a donation to the kayaking for IBM cause head to https://www.mycause.com.au/page/230731/kayaking-for-ibm?fbclid=IwAR07CMCYbIMuPzJB0vVkhs3rfCxmkPyHYNfh5kLXdpy9pzi4XftZU5w4cDo.

I am so thankful for their support I even sourced this one of a kind cake from Ali's Sweet Treats to say thank you for all the hard work they do," Ms Staal added.

To help donate blood head to www.donateblood.com.au

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