'Joost, you’re a hero': MND sufferer describes how visit from rugby legend helped him to keep fighting

07 February 2017

When Deon was diagnosed with MND in 2004, doctors told him that he may only have months to live – but he is still holding on.

He knows all too well the bitter and drawn-out fight which Joost fought against motor neuron disease (MND).

57-year-old Deon Nel of Krugersdorp has been fighting the same fight against the destructive disease for 12 years.

And for him there’s only one way to describe the late rugby legend’s last fight against the disease: “Joost is a hero.”

In 2012 – roughly a year after his MND diagnosis – Joost made a surprise visit to Deon at his home. On a photo Deon lays on a hospital bed, connected to a ventilator and drip. Next to the bed sat Joost, who looked stronger and healthier than he did shortly before he passed.

Read more: The heartwarming photos Joost shared on his last birthday

“The tears rolled underneath my glasses,” Deon’s wife, Bernice, told us yesterday telephonically describing her reaction to Joost’s death. Just hours before he died the couple sent him a message: “Joost you can do it, you are very strong.”

She relayed the tragic news to her husband Deon. “We both feel so shocked and saddened,” says Bernice.

“Joost’s visit in 2012 was the highpoint of Deon’s life. Thanks to his encouragement we became part of the J9 family.” J9 is Joost’s foundation which aims to raise awareness about MND.

Read more: ‘You were and always will be my first love’: Heartbroken Amor’s tribute to Joost

“Back then we thought MNS was very rare, but thanks to Joost so many people now know about it. And J9 has created a family for people suffering from the disease,” says Bernice.

Deon has been connected a ventilator since a heart attack he suffered in 2008. “It gave him a second chance at life.”

Joosts’ public battle with MND was an inspiration to other sufferers, says Bernice. “Deon and I will continue to fight in honour of Joost and all the other soldiers who lost their fight against MND.”

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