PEGGING washing on the clothesline was how Jodie Lewis' mum Val started to realise he body was failing. The household chore was the same way AFL great Neale Daniher first noticed the onset of motor neuron disease.
The Beast is what Daniher calls the disease that attacks muscle control and progressively robs the body of speech, breathing, swallowing and movement.
Jodie appreciates the moniker, which has become popularised in the AFL and Australian sporting communities. She said it helped people better understand what is a hideous and cruel terminal disease.
Jodie has lost four family members to MND: her nana, two uncles and her mum, Val.
For a long time, her family did not realise her nana had MND and an uncle was diagnosed after his death.
When Val first showed symptoms, Jodie had hairdressing clients who were nurses that urged her to get tested for MND. Her mum died about a year later. Val was 66 years old.
Jodie said her mum's speech loss was one of the cruelest parts of deterioration, especially once this was beyond a point where anyone could understand her.
One Christmas, Jodie noticed Val was quite agitated and, after trial and error, ended up at the pharmacy where Jodie realised her mum wanted to buy perfume. Perfume was what Val gave Jodie as a present every Christmas. That was their last Christmas together.
Two Australians dies on MND each day and each day two Australians are diagnosed with MND. Most Australians diagnosed will die within two and a half years. Almost two in three Australians with MND are aged under 65.
There is no cure.
This is why the Big Freeze beanies and the annual Big Freeze at the 'G on the Queen's Birthday holiday are so important to Jodie in fighting for a cure.
You just never know who's going to be affected but it will rear up again and I would not wish it on anyone.Jodie Lewis
"It's in my family. You just never know who's going to be affected but it will rear up again and I would not wish it on anyone," Jodie said.
"I would love there to be a day when we could say, 'you've got this disease but you can do this and survive'."
Neale Daniher went public with his MND diagnosis about two months after Val's diagnosis.
Jodie said what Daniher had continued to achieve in the seven years since had been amazing.
Each year, Jodie's family has collected Big Freeze beanies. Her children can get perplexed when they see people wearing old beanies, wondering why they have not updated to keep helping the cause.
One of Jodie's children suggested the latest Big Freeze beanie should be an entry requirement to the MCG on the Queen's Birthday holiday.
We've had a late captains call for a slider to join the lineup... Gil McLachlan is set to take the plunge for Big Freeze 7 as a slider! Now there's only one thing... what is Gil going to wear!? Find on on Channel 7 from 2 pm Monday! #BigFreeze7pic.twitter.com/nxogMTiczQ— F I G H T M N D (@FightMND) June 9, 2021
The past three years, Jodie has taken part in the Daniher's Drive car rally and met "the most amazing and giving people". Jodie said it was always heartbreaking to notice when those with MND do not return to the rally the next year.
Fight MND Beanies are available at The AFL Store and Bunnings and Coles stores this week.
Meanwhile, Coles Wendouree store manager Sharon Germon has been challenging her team and customers to raise more than $40,000 for Fight MND this year. If successful, Ms Germon has pledged to take part in an ice bucket challenge.
The store has raised about $37,000 by Friday.
Fight MND has set a $2 million fundraising target by half-time of the AFL's Melbourne-Collingwood Queen's Birthday clash in Sydney on Monday.
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