Local J9 Warrior keeps on fighting
It is important to remember that motor neuron disease is still alive and taking lives.
After the death of former Springbok scrumhalf, Joost van der Westhuizen shook the country more than a year ago, the J9 Foundation – which he created in order to educate people about motor neuron disease (MND) – continues spreading awareness and creating effective support systems for all those suffering from the deadly illness, with the help of the Joost Warriors.
In addition to their efforts, local resident, Bernice Nel, wife of Deon – a Bulbar ALS Warrior who has survived 14 years with the disease – decided to create a platform for ‘ALS Pals’ to meet up and share their experiences.
The Meet and Greet was subsequently held in September at Riverstone Lodge, and a great many ALS Pals together with their families and friends were welcomed. The late Joost’s parents, Gustav and Mariana van der Westhuizen, and his brother, Pieter, were also in attendance.
According to research done by Bernice, it has been 150 years since the first diagnosis of ALS MND with no cause, cure or treatment developed to date.
Despite Deon’s current state, she added that he is still in a good space since he has chosen life support, which granted him a second chance at life. She also said that it is very rare to meet someone who has lived with ALS Bulbar MND for 14 years.
During the course of the event, she spoke about the need for a Fund-raising Committee under the umbrella of the J9 Foundation, as ALS not only cripples its victim in body, but also financially. She also discussed the different types of MND and the effects it has on its victims.
After Pieter spoke about the Joost Warriors, guest speakers Lynne de Gouveia and Rika Frey from Perryhill International discussed Trachea and Peg Tubes which become a vital part of every ALS patient’s journey.
At the end of the day, a scrumptious meal was enjoyed by all and all the guests were free to network among each other. Bernice would like to thank everyone who was involved in the event and everyone who contributed to the day’s success.
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