Imagine living life knowing your own genetics were conspiring against you.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Living with the knowledge your own genetic make-up may contain a ticking time bomb must be incredibly difficult to deal with.
That is the reality that sisters Jessica and Kaitlin Ellis live with each and every day.
Hearing their story is confronting.
They watched their mother Susan die slowly from Motor Neurone Disease, or in Kaitlin's words: "We pretty much watched her starve to death - it was horrendous."
Yet the hardest part was telling their mother they had undergone genetic testing which showed they may well suffer the same fate.
The genetic testing confirmed they carried the C9ORF72 gene and they too would almost certainly develop MND.
"The hardest part was telling our mum - I still remember her wail of despair," Jessica told the Illawarra Mercury.
"It must have been bad for her to know her only children had the same fate as her."
The sisters have formed a support group to help others called MND Genies.
Along with friend Rebecca Young they were in Wollongong on Wednesday to view some of the world-leading research into MND being conducted at the Illawarra Health and Medical Research Institute under renowned scientist Professor Justin Yerbury.
Professor Yerbury's own story has gained national exposure as he leads a team trying to break the code on a disease which is slowly taking him.
Professor Yerbury and his team of researchers are confident they can help unlock potential treatments into the future or even a cure.
As Rebecca said, many people living with the diagnosis that they may develop MND, they feel like they are living on borrowed time.
Until the research starts winning the race against time, all people like Jessica, Kaitlin and Rebecca can do is follow Professor Yerbury's simple rule.
"Live for every moment."
Not a bad motto for everyone to follow in fact.
