Halfway there to help other sufferers
An event to raise funds so that a motor neuron disease sufferer and his wife can become motivational speakers was succesful.
A fundraiser organised by local singing sensation Candy B Benson and supported by the Krugersdorp community to raise funds for Deon Nel, a motor neuron disease (MND) sufferer was a success despite some obstacles.
About R60 000 was raised during the event that was held at the Krugersdorp Centenary Hall, which approximately 350 people attended.
The money raised will be used to buy a van to enable Deon and his wife Bernice to encourage other sufferers of the disease and visit, give support to, educate and inform sufferers’ families.
Candy B Benson who had the idea to raise money by using her singing talent says it was a wonderful feeling to see how much Deon, who attended the event, enjoyed it.
“Even though I was ill, I sang with a sore, hoarse voice and continued dancing my heart out and just gave it my all. I feel blessed that I was able to use the talent that God has given me to help others like Deon to achieve a goal and not just for personal gain.”
She says that she believes the people saw and appreciated that she was giving her all for Deon as the event was not about her, but about his plight.
“I think it was very important for Deon to see how much he is loved and respected, and that it was important for the people who attended the event to see how one’s life can change in the blink of an eye.”
She also thanks her follow artists and dancers who gave their all and who contributed to the success of the event.
“A special thank you to the band Spanglish, Tanya Botha, my dancers Tanneth, Nadia, Shané and Chanté, Jamie-Lee (a belly dancer) and to Lindie Stander (known as suster Elise in the soapie Binneland) for being an amazing emcee and to Louis de Nobrega and his dance school Rhythm in Us.”
During the event Bernice explained Deon’s disease that was diagnosed in 2004, and said that they believed that he was the longest survivor of bulbar ALS/MND in South Africa.
“There are different types of ALS/MND of which bulbar palsy is the worst and fastest-progressing form. Doctors’ prognoses were that a person with the disease live only one to three years, with a 10 per cent chance of living up to five years.”
She explained that the disease affects the motor cells in the brain and in the spinal cord, which control the muscles that enable one to move, speak, breathe and swallow. There is no known cause, cure or treatment for sufferers of MND.
“Deon decided to fight the disease and no matter what, he decided to believe and trust in God and never give up,” an emotional Bernice told the audience.
“He chose to be peg-tube fed and mechanically ventilated, otherwise we would have lost him in 2008. Choosing this gave him a second chance at life.”
She thanked all for supporting the event and to everyone who sponsored the prizes that were raffled, as well as hampers and other items that were auctioned off.
They still need another R60 000 to purchase a van.
Those who wish to make a contribution can contact Bernice on 011 954 2327 or 082 750 8481.
