After her mum Dawn was diagnosed with motor neurone disease (MND) in 2019, Jaime Schultz watched helplessly as the woman she remembers as her "role model" and the "life of the party" succumbed to the effects.
"She used to sing in the house — [but] mum lost her voice after about 12 months, that was the first thing to go," said Ms Schultz, who lives in South Australia.
"Not being able to communicate verbally was really hard for her."
Barely two years after her diagnosis, Dawn Owen lost her battle with MND, and died in 2021 on June 21 — ironically, Ms Schultz said, on MND world awareness day.
She said it was a battle made much harder by the fact that almost all the responsibility for her mum's care fell on her family.
Like two thirds of MND patients, Mrs Owen was over the age of 65 when she was diagnosed and did not qualify for NDIS support.
"Dad's not young, bless him, but he was doing it on his own," Ms Schultz said.
"He was getting her out of bed, putting her in bed, getting her up and out of the chair, taking her to the bathroom, all the personal care he was doing, feeding her.
But a new funding deal in South Australia is now aiming to make that process a little more bearable, by delivering vital support.
The SA government has committed $2.4 million for care provider Motor Neurone Disease SA (MNDSA) over the next four years.
That amount includes $500,000 a year to help over-65s get immediate support to a "multi-disciplinary team of health professionals".
Another $100,000 a year will go towards rapid-access loans to enable access to equipment, including devices for breathing, mobility and communication.
"We absolutely had to do something — particularly when we heard that South Australia is the only mainland state that doesn't provide state government help to its local MND support organisation."
MNDSA CEO Karen Percival described the funding as a "game-changer for us".
"It gives us certainty around staff planning, resource planning," she said.
Adelaide grandfather Graham Johnson, who has been diagnosed with ALS — a type of MND — had been vocal in lobbying for such an outcome.
While he counts himself "lucky" because he was diagnosed before the age of 65, and therefore already entitled to support, Mr Johnson said the new funding would result in inestimable benefits to those who remain ineligible for NDIS support.
"Speech pathology was really important, because my voice is starting to play up a little bit," he said.
"I want to keep talking to my grandchild."
Ms Schultz is likewise in no doubt as to what her mother would have made of the support.
"It's a huge announcement, so much money — so much needed money, and will go such a long way to help people in the same situation," she said.
