Naomi and family
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.
Comments
10 Comments so far
My dear friend’s husband has been battling the disease for the last 10 years. When he was diagnosed he was told he would have around 2 years or so to live (when his daughter was around 1). As a result he started writing a book for his daughter which has recently been published. It is quite incredible. Their story was featured on the 7:30 report. The link for the story and the book is below if people are interested in understanding more about the daily experiences of those with the disease.
7:30 report-
http://www.abc.net.au/7.30/content/2012/s3662975.htm
Silent Body, Vibrant Mind
http://peteanderson.org/?page_id=2
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Naomi i feel your pain – though mine is only my father and nearly his entire maternal side (one sibling and a handful of cousins remain alive) – it was swept under the carpet until he was diagnosed, then 3mths later he was gone. I’m in the twilight limbo land of deciding if i want to be tested or not – initially i didn’t (he passed 8 years ago, we have blood stored for testing) – i have 4 children now, and i’m 32.
The youngest in our family passed when he was 33 – 8 weeks after diagnosis (we apparently like to take the quick route – which to be frank watching others suffer longer ultimately we have been somewhat blessed in that dept if you can use that phrase in this context). I have had pneumonia lately and can’t shake it – it is how my dad started – and whilst rationally i know it doesn’t mean anything (or as my GP put it it’s like comparing an elephant and a giraffe) – irrationally i worry – a lot. I look at my tongue for those tell tale quivers, i look on my left shouldblade for the muscle spasms i know will come as the first indicator something isn’t right.
no one can truly understand what it is like until they have lived it – and it’s not something i would wish on my worst enemy – i watched the proudest and strongest man i know be reduced in such a rapid time to a child – reliant on us for everything
no one should live like that 
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My mother, her only sister, their fathers mother died form it, now the son of one of their cousins has it. I don’t know if I want to be tested, knowing you can’t to anything to prevent it, I wouldn’t want to know that I had the gene, I’d be always expecting it.
People see Stephen Hawking & think you can live for years, but don’t realise that he can’t do anything for himself, including breathing, eating & speaking. Most people really don’t want to live like that – And couldn’t afford the staff anyway.
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Thankyou Naomi for telling your story.my husband has MND bulbar Onset and his speech has just about gone and eating is a big problem.but biggest problem is or family and friends,not able to understand what is going on and they stay away,which is really hard on my husband.i have posted your story on my FBpage so they can read it and might be easier for them to understand
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noelene we found the same thing with dad – the true friends stayed, the fair weather ones buggered off.
i am sorry you are being abandoned when you need them most
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Pingback: The disease for which there is nothing « Kate McEvoy Richards
Thank you Naomi from MND Australia for sharing your story and highlighting the devastating impact of MND ahead of MND Week. Just wanted to let everyone know that about 10% of MND is ‘familial’; that is, there is or has been more than one affected person in a family. The remaining 90% of people with MND are the only affected person in their family and are said to have ‘sporadic’ MND. In the 10 % of cases where it is familial identified gene mutations are found in about 60% of those cases. The genes that cause the other 40% of cases of familial MND are yet to be discovered. Please call the MND association in your state or territory if you would like to talk about genetic testing – http://www.mndaust.asn.au/state-mnd-associations/
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I applaud you Naomi for having the strength and courage to share your story.
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Thank you for this article. My grandma died of MND. She died while I was still a toddler so I don’t remember her, and it’s too painful for my mum to talk about. Ridiculous that politicians can squander millions on various frivolities but not fund important research like this! Anyway I didn’t know you could be tested for the gene. Could we have some info on where & how this is done, please?
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Thank you Naomi. My father passed away about 9 years ago of MND when I was 12 yrs old. From the time he was diagnosed to when he passed away was only 9 months. I remember sitting and talking with him all the time but he couldn’t move any part of his body. I’m glad his suffering is over as you are 100% right when you say it is the worst disease out there. Fantastic work trying to make a difference and promote awareness of this illness!
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Thank you Mama Mia for bringing this terrible disease to a wider audience. My Dad had MND and it really was the most awful thing to watch him deteriorate. The only blessing was that he could still converse up until the end.
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