NEWS

‘Last week, I lost my best friend and my hero.’

Loving husband and father David Keith Robinson recently lost a long battle with Motor Neurone Disease. CONTRIBUTED

by Belinda Robinson

14th May 2016 9:00 AM

SUNSHINE COAST DAILY

 

WITH Motor Neurone Disease Awareness Week upon us, solicitor Belinda Robinson has shared her heart-wrenching story of losing her father David Keith Robinson to the devastating disease.

“LAST week, I lost my best friend and my hero, my amazing father who fought a horrific battle for four years with Motor Neurone Disease. He was just 59 years old and weighed approximately 45kg at the end.

This cruel autoimmune disease steals the sufferer’s ability to talk, walk, eat, hug, swallow, breathe, and eventually their ability to live.

This is because the disease causes the neurons controlling the muscles that allow us to move, speak, breathe and swallow to undergo degeneration and die.

Currently there is no treatment and no cure, there is no confirmation of the cause/s of the disease and it appears that there is limited awareness of the disease.

It is a truly devastating and undignified way for anybody to live and it is incredibly painful to watch a loved one suffer this way.  

I watched my determined father struggle to the point of exhaustion every single day to attempt to do all of these normal everyday activities that we usually take for granted, such as ingesting solids or liquids, going to the bathroom, communicating, walking and even holding up his head to see.

Yesterday, I said my final goodbyes as we laid him to rest, at peace at last.

However there is an agonising, unfillable void left in all of my family’s hearts as he was taken from us far too young and far too soon and we had so much more love and happy memories to share with him.

Rest in peace, Daddy. I will love you always.

This week from May 1 to May 7, it is Motor Neurone Disease Awareness Week. Awareness and research is the only way that we can change the future for those suffering Motor Neurone Disease.

Without awareness, a cure cannot be found.”

mnd article.jpg

Spotlight on MND
MND Australia

 

"My best friend, my hero, my father"

On 24 April 2016, I lost my best friend and my hero, my amazing father David Robinson who fought a horrific battle for 4 years with Motor Neurone Disease. He was just 59 years old and weighed approximately 45 kg at the end.
 
My father did not drink or smoke. He was highly active, performed weight training, swimming and skipping every morning, as well as Falun Gong, tai chi and meditation. He was fit, maintained a healthy weight and enjoyed a balanced diet, and was rarely sick. He had an infectious and delightful sense of humour, and an enormous zest and enthusiasm for life, which is how I will always remember him.
 
In 2012, we took a family holiday to New Zealand. At this time, he complained of a developing impediment, he believed his speech was slurring. However initially it was unnoticeable to anyone but himself. Over the following months, the slurring of his speech and difficulties swallowing increased. He began experiencing difficulties holding objects and using his hands due to weakness of the hand muscles. He also experienced weakness of the tongue and throat muscles, as well as cramps and muscle twitching.
 
He visited a doctor and was referred to a neurologist who diagnosed him with bulbar onset Motor Neurone Disease in early 2013. I remember Googling “Motor Neurone Disease” and reading about it for the first time on Wikipedia. At the time it did not even feel real. My father was determined for the diagnosis to be incorrect, a mistake, and he fought relentlessly.
 
As the disease rapidly progressed, I watched my determined father struggle to the point of exhaustion every single day to attempt to do all of the normal everyday activities that we usually take for granted, such as ingesting solids and liquids, going to the bathroom, showering, dressing, communicating, walking and even holding up his head to see. It is a truly devastating and undignified way for anybody to live, and it is incredibly painful to watch a loved one suffer this way. My father was so brave, he kept his spirit and amazing sense of humour right until the very end.
 
In April this year I said my final goodbye as we laid him to rest at peace at last. However there is an agonising, unfillable void left in all of my family’s hearts, as he was taken from us far too young and far too soon, and we had so much more love and happy memories to share with him.
 
My selfless father fought for my family for 4 long years. And now it is my turn to fight for him, to fight for a cure. I am currently spearheading an initiative to raise awareness for Motor Neurone Disease. I recently held a morning tea event “Drink Tea for MND” in Noosa on 28 June 2016, with all proceeds going directly to the Motor Neurone Disease Association of Queensland. I have been published in the Sunshine Coast Daily, The Noosa News and I have appeared by radio on 96.1 Zinc FM to discuss Motor Neurone Disease. A cure is out there, and I strongly believe that together we can change the future of Motor Neurone Disease. Rest in peace, Daddy. I will love you always.

dad1.jpg
dad1.jpg

MND #IceBucketChallenge 2016

21 August 2016

In light of the Motor Neurone Disease Ice Bucket Challenge held every year in the months of July and August, Belinda completed the challenge outside Caloundra Magistrates Court to help raise awareness and to encourage others to donate and participate in the challenge.

All proceeds raised from the challenge to be split towards the Motor Neurone Disease Association of Queensland and MND Australia.

The text on the cards being held up reads:

"This video is in loving memory of my dad

Who passed away on 24 April 2016 from MND

He was one of the 2000 Australians who die every year from MND

It never gets easier without you dad

I miss you everyday

There IS a cure out there

There are many others like me who have dedicated their lives to raising awareness of MND

And we won't give up until a cure is found

Please like and share or join the challenge to raise awareness #icebucketchallenge

To donate visit : mndaq.org.au or mndaust.asn.au"

Motor Neurone Disease Association of Queensland 

"The Cornflower" Newsletter

Winter 2016

22 July 2016

"The Day I Will Never Forget"

cornflower.jpg

Motor Neurone Disease Association of Queensland 

"The Cornflower" Newsletter

Winter 2016 Edition 

22 July 2016

"Drink Tea for MND"

cornflower1.jpg
f.JPG
thumbnail_IMG_4539.jpg
mt3.jpg
mt1.jpg
mt.jpg
morning.jpg
MND.jpg

June 2021 - MND Awareness Month

21 June is Global Motor Neurone Awareness Day.

Motor Neurone Disease is fatal. It paralyses the body leaving the mind intact. There is no known cause, no cure and no remission. The average life expectancy is 2 to 3 years from diagnosis.

In Australia, each day at least 1 person dies from Motor Neurone Disease and another person is diagnosed.

MND Associations, such as the Motor Neurone Disease Association of QLD, help people to live while fighting MND.

I am selling $2 blue cornflower brooches with all proceeds going directly to the Motor Neurone Disease Association of QLD. The Blue Cornflower is a symbol of hope for people living with MND- hope to find the cause, develop effective treatments and discover a cure.

Your contribution will help to provide information, support, equipment and research funding. The hope that is needed to never give up.

#NationalMotorNeuroneAwarenessDay

#MotorNeuroneAwarenessDay

#MNDAwarenessDay

mnddd.jpg
mnd2.jpg

Noosa News
"On a Mission to Find a Cure"
August 2017

What is one thing you would like to change about the world?

My best friend and hero, my incredible father, passed away last year from Motor Neurone Disease and I am actively involved in raising awareness and funds for research towards a cure. My vision is a world free of Motor Neurone Disease and I hope to start a foundation in his memory in the future.

What is your greatest accomplishment in life?

Becoming admitted as a solicitor which has always been my dream. I have been working in the legal industry since I was 16 and I have dedicated my life to fighting for justice which is my greatest passion.

If you were Prime Minister/ruler of the world what laws would you make?

If I were Prime Minister I would provide more funding and subsidies to community legal centres, domestic violence legal services and shelters, rehabilitation facilities and youth crisis centres. I would investigate what more the government can do to effectively support those suffering from mental illness and substance addiction.

What is the best advice you have ever received?

Put your head down and work hard. Never wait for things to happen, make them happen for yourself through hard work and never giving up.

If happiness was the national currency, what kind of work would make you rich?

Most definitely the work that I currently do as a criminal lawyer. I am grateful to have the opportunity to assist people, particularly those who are disadvantaged either physically, mentally or financially, to defend their rights, protect their liberty and to access justice by giving them a voice.

 

What is your best childhood memory? What makes it so special?

All of the cherished memories I have of the beautiful relationship I had with my late father: racing to the door to greet him with a hug every day when he came home from work, sitting on his lap listening to Enid Blyton stories with a warm tea, staying up all night to talk about the universe and laughing for hours until we cried.

 

If you could be transported back in time, where and when would you like to be?

I would like to go to the future instead to see how we are managing global warming, technology, cures for diseases and world relations.

Who are the three people you most admire – dead or living?

My parents, Michelle Obama and Hillary Clinton.

mission1.jpg