Naomi Cocksedge, a firefighter from Windang in NSW was born into a family with a remarkable story. A remarkable story with a devastating twist that would claim the lives of her grandmother, her mother, her sister as well as aunts, uncles and cousins.
This is because the majority of Naomi’s family (maternal side) carry a gene, which predisposes them to the development of Motor Neurone Disease (MND).
Motor Neurone Disease, is a disease, which you may have heard of, but chances are you don’t know much about it. Let Naomi fill in some of the blanks:
“Motor Neurone Disease is the worst disease. I have no hesitation in saying it is the worst disease in the world. It takes over the person’s body, shutting down muscles and organs one by one over a series of weeks, months or years until finally the person loses the ability to breathe and dies.
“People with Motor Neurone Disease have nothing. There is no treatment and no cure. So from the point of diagnosis they know that while their mind will remain healthy and active, their body will gradually shut down around them until they eventually die. Watching someone die of it is horrific.”
Approximately 12 Australians die of MND every week in Australia and there are approximately 1,400 Australians currently living with the disease. MND ‘switches off’ the nerves, which normally signal our muscles to move, leaving a person paralysed but fully alert. Most people survive an average of 2-3 years from diagnosis.
For Naomi who is a Mum of two (and currently pregnant with her third child) the hardest thing she has faced in her entire life was the deterioration and death of both her mother and her sister. Her sister was only 27 and a young mum of two children when the disease robbed her of her life. Her mother was just 52 and had many years to look forward to as a grandmother.
With such a strong genetic link to the disease Naomi and her husband decided to be tested for the MND gene when they began considering having children of their own.