Deon was diagnosed with motor neuron disease (MND) in November
2004 and has celebrated every year of his survival since then. He has Progressive Bulbar Palsy (PBP), which is the type that progresses the most quickly, and has the worst prognosis. On diagosis, he was given two to three years to live.
Deon can only move his eyes now. MND has stolen his body but not his
soul. Deon has a fighting spirit and wants to live no matter what, and he lives by the motto No White Flags Ever.
Deon chose technology as his “cure” until a medical cure is
found, and has been mechanically ventilated and PEG tube fed since 2008.
He suffered cardiac arrest in 2008, and was resuscitated, intubated & ventilated on a mechanical ventilator. He spent four months in ICU at
Netcare Krugersdorp private hospital under the care of Dr Kees de Hoog
and dietician Rene Lamprecht, and together with Deon they fought for his very
Deon weighed 30kg then and now, still under their care and home
cared for by his wife Bernice, he weighs 75kg and is looking well.
Deon’s brain is 100% – “his memory is better than mine!” says Bernice.
The couple have been married for 34 years and have two sons, Nate and Jason.