Kathryn Ratcliffe of Tilba Tilba and her daughter Stella are raising awareness and funds towards a cure for motor neurone disease. MND has affected at least five generations in this family including Kathryn's brother, Matt, an active Narooma community member in 2015.
“MND is particularly cruel terminal disease with as yet little treatment and no cure,” Kathryn said.
Kathryn and Stella will participate in the Run Melbourne for Fight MND on Sunday, July 30. Fight MND is an organisation founded by retired doctor Ian Davis and AFL legend Neale Daniher, both of whom have the disease, with the prime mission to cure MND by raising awareness and finding effective treatments.
Kathryn is taking on the 10km event as one of Fight MND's principal runners. Her goal is not only to raise $5000 but also to ensure the message about MND gets out and to encourage others to participate!
Eight-year-old Stella is also working hard for the cause. "I would like to raise as much as I can because my uncle died from MND and it's very sad. My grandpa died from it too and I never got to meet him. My mum is doing the run for Fight MND and I am doing the walk. Please help, every little bit counts!"
Donations can be made online via everyday hero to :
Kathryn’s friend and Tilba Aboriginal artist Merryn Apma has also donated a specially created artwork for the fundraising cause. The story of the painting is:
"The large circle is a blooming Desert Rose.. with white lines representing the brain sending signals that something is breaking down. The symbols on the outside of the circle are people both males and females representing how the disease can affect everyone and through the generations.. then the smaller desert roses breaking away eventually falling to single petals seen in the painting showing how progress breaks things down. The small circles around the outer showing all the areas working trying to find a cure....."
It is currently available for viewing at Merryn's gallery in Central Tilba. Please contact Kathryn via message or on 0423025686 if you are interested in purchasing this unique piece or please share to everyone and spread the word.
“Thank you so much to Mez for your amazing representation and understanding and thank-you to Michael from Frame and Print Bermagui for donating the stretching of the canvas,” she said.
What is motor neurone disease?
MND is a cruel disease that can strike without warning. It is a progressive degenerative condition where the messages from the brain to make the muscles work slowly break down.
It can start with a gammy foot. Or strange muscle twitching. Or difficulty swallowing. You might start to trip over easily. And have painful muscles.
Because the symptoms could be one of many things, doctors don’t first recognise it. It is months before a diagnosis. Which means it is months before you might start on the only medication currently available that might help slow it down.
After a while, your hands may not work either. Picking up cups, opening lids, or using your fingers to open things like zip lock bags, and soon, lifting your arms up just to put a shirt on becomes hard work. Or not even possible.
Walking up stairs takes a long time. And a lot of effort. Your diaphragm isn’t working properly either and your lung capacity decreases, making any movement a large effort. You walk down the street aided with your walking stick, your speech now also affected because there is no air in your lungs and your larynx won’t work, you trip over nothing, fall on the ground and no one helps because they think you are drunk.
With muscle deterioration comes the loss in dignity. You can’t reach anything in the toilet. You can’t stand up or even get to the shower. You can’t communicate clearly. Frustration builds but you can’t even kick the door. Or shout. And then, you can’t swallow. Or have a beer. Or eat. Food becomes a liquid fed from a bag into a hole in your stomach.
Motor neurone disease is a form of physical torture, turning your body into a paralysed shell. Currently, there is no cure and little option to attempt to slow its progress. But in the words of a Steve Gleason, a famous American footballer who also suffers -
“It is not incurable, just underfunded.”
There is incredible talent in the medical research field but it needs dollars to happen. MND Australia, the ice bucket challenge, Neale Daniher and Fight MND have brought this disease to attention in Australia in the last three years. So much is happening but so much more MUST happen.
Imagine yourself slowly being paralysed. So that you couldn’t breathe anymore. Please help us keep up the momentum. Donate here: