Motor Neurone Disease. How you can help

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.

“The day I was told I don’t have MND was amazing. But it was very bitter sweet. I felt like I had won the lottery but at the sametime I also felt a lot of guilt that I didn’t carry the gene when so many of my family members did. This guilt has been very difficult to deal with.

“For ten years I had been questioning every movement and every twitch in my body thinking ‘oh god, I’m next’. But when they told me I don’t carry the gene I thought, ‘wow I am going to live until I’m 80’ and that was absolutely amazing” said Naomi.

The fact that families like Naomi’s can test for the genetic factor has offered relief to many. IVF can help those people who carry the gene to prevent the passing of the gene onto the next generation of children.

Naomi and her husband had decided to go down the path of IVF to rule out passing on the gene but ultimately this wasn’t necessary, as they don’t carry the gene. However Naomi points out that for people affected by the disease it is a relief to have a sense that they can do something to stop the continuation of MND within their family tree.

Now for Naomi and her brother, it’s a family effort to do all they can to stop MND. Naomi’s brother Justin is a PhD scientist who has dedicated his life to understanding more about the tragic disease. Naomi’s recent fundraising efforts will see $22,000 go towards her brother’s research.

Together they are hopeful that the future will offer treatments and even a cure to help the people for which there is currently nothing, no hope and inevitable death.

“We can all do something to help people with MND. All charities are important but I would urge people to think about MND and the people who have no treatment the next time they have $20 to give to charity. We need every cent we can get to fund research into treatments and ultimately a cure.”

Naomi now has two beautiful boys and another baby on the way who will carry on the family tree with a bright, healthy future.

Naomi Cocksedge is a firefighter from Windang, NSW and proud mother of two (currently pregnant with her third child). She is committed to building awareness in the community about MND – the devastating disease that has claimed so may of her family. To find out more about MND, the options available for genetic testing or how to get involved in raising funds for MND Week go here.