To mark 40 years of MND New South Wales this year, we are highlighting 40 years of stories from our members, staff, volunteers and experts.
You can help MND NSW continue supporting people with motor neurone disease by making a donation here.
Ann, from Botany Access, has been raising funds for MND for many years, after her husband John was diagnosed with motor neurone disease in 2002.
When they were at the hospital, the doctor knew something wasn’t quite right, but Ann had an idea of what it might be.
“The doctor said, "No, no, he's not right." I said, "Do you think he could have motor neurone disease?" It was one of those old-fashioned professors, he said, "What makes you think that?" We sought some other opinions and then he was diagnosed a few months later.“
Ann isn’t sure what she had seen or read that made her think that, but the day John was diagnosed is one she will never forget.
John was an incredibly strong, inspirational person. For Ann, it was really hard for her to watch such a stoic person deteriorate during his battle with MND.
“He thought he was still going to live forever and find a miracle cure. Not give into it. He wouldn't give in.” Ann recalls.
John bravely fought MND for three years and for as long as he could, he kept busy and involved with the family business, including training his two stepsons to take over once he couldn’t work any longer.
John’s MND affected his throat initially and his disease quickly progressed to the stage where he couldn’t speak and needed a feeding tube.
But John’s mind was still sharp and there was still so much he could contribute. Ann watched on as one of her sons came up with the idea for John to use a whiteboard to communicate with employees and customers.
It was being able to remain involved in the business that kept him going and provided immense support to them all during that time.
A few weeks before John passed away, the family bought a hundred tonne crane to place out the front of the business, Botany Cranes. They decided to name the crane JEB, which were John’s initials.
Ann can remember the day the crane arrived very clearly.
“I've got photos of him in front of that crane, shortly before he died. John was just so proud.”
The crane, along with John’s ashes and a memorial plaque are still on display at the entrance to the business today.
There’s also a big sign that says “We support MND”.
While Ann is grateful for the immense support that she and John received while he was battling his disease, she knows that many others facing an MND diagnosis aren’t as lucky. That’s why she’s still passionate about supporting MND NSW.
A percentage of each sale from the business is donated to MND NSW and the staff promote donations through their business on each customer invoice. It’s a small but important way they continue to support people living with MND, in memory of John.
Over the past 40 years, we’ve been there for so many people facing an MND diagnosis like Ann’s husband John. Thank you for your support and for helping us be there when people need us the most. With your help, we are continuing to make an incredible difference to people living with Motor Neurone Disease.