Would you want to know if you inherited a deadly gene from your mother?
At the age of 57, Susan Ellis was diagnosed with motor neurone disease (MND), a condition which had killed her brother seven years earlier.
This left Susan's daughters Jessica and Kaitlin Ellis with the dilemma of whether or not to get genetically tested.
In the end, they both did, and now they know they are carriers of the gene.
"In many ways, I regret doing the test when I did," Kaitlin said.
"I wish I had waited until mum passed away. When we told our mum, it really broke her.
"And she was so debilitated physically by then, she couldn't even hug us to make us feel better."
Scenes like this led Jessica and Kaitlin, alongside fellow MND carrier Rebecca Young, to form a support group called MND Genies.
The group is designed to help anyone with MND in the family to make their own decision about genetic testing.
"We just want to let people know we are here to help them. If they need some support we will be there with them and listen," Jessica said.
Dealing with loss then discovering the gene
Rebecca lost her father to MND in 2007 and took a MND test in 2015, finding that she has the gene.
"It's been hard but meeting Kaitlin and Jess has helped me a lot in moving on with my life and trying to find out more about this disease and trying to help other people in the same situation," she said.
Although her life has changed, Rebecca has no regrets that she undertook the test.
"I'm just planning a future with my children and partner. You know, trying to plan," Ms Young said.
Yerbury offers support to the MND Genies
Recently, the women wrote to Justin Yerbury, the leader of the MND research lab at the Illawarra Health and Medical Research Institute (IHMRI).
"We would really love to meet with you and share our story," the letter said.
"We understand you are working very hard to find a cure while also fighting this disease.
"We admire you and your courage."
The MND in Professor Yerbury's family was his motivation to study the disease, and he chose to be genetically tested some years ago.
"The decision to have a genetic test is a very personal one," says Dr Yerbury.
"There is a lot to consider and I think that it is vital to understand what the results of the test mean."
The MND Genies recently took a tour of the Wollongong facility, but even though Professor Yerbury regularly comes into the lab, his health due to his own MND prevented him attending that day.
But he sent some messages outlining the latest research.
"There are several different genes in which mutations can cause MND. Mutations might not cause MND in every carrier. So it is complicated," Dr Yerbury said.
"My grandmother was diagnosed with MND at the age of 72, but with the same mutation, my diagnosis came when I was 42."
The sisters know that there is an even chance that MND is around the corner for them, probably at the same time it affected their mother, but they remain positive.
"I can picture my MND," Kaitlin said. "Every time I do something proactive, I'm kicking it back a little more."
