A child’s birth brings excitement, smiles, giggles and the promise of new beginnings. But for Anton and Carla van Niekerk their elation at becoming parents for the first time was overshadowed by a dark cloud of uncertainty and fear of what the future holds when he was diagnosed with multiple sclerosis.
The uncertainty and fear started in 2019 when Anton, who was manager of the Engen Convenience Centre in Sandbaai, woke up one morning unable to speak. He also experienced vision loss in one eye.
“I was sent up and down for tests and was diagnosed with the strangest things from a heart attack to yellow fever and cancer,” he recalled. “I felt helpless and frustrated.”
During an appointment with a neurologist at Mediclinic Tokai in Cape Town Anton heard the most likely diagnosis was multiple sclerosis. He was then referred to Dr Andrew Frost, a neurologist at Life Vincent Pallotti Hospital in Pinelands, Cape Town, who does clinical trial research particularly in fields of degenerative neurological diseases, movement disorders, multiple sclerosis, complex multisystem diseases and such. He was diagnosed with Relapse Remitting MS and qualified as a candidate for the trials.
Relapse Remitting MS is a type of multiple sclerosis where the symptoms get worse (relapses) followed by recovery (that’s when it’s “remitting”). The patient’s condition doesn’t worsen between relapses, but after each relapse it can end up worse than before.
scary prognosis
Carla recalled the fear and uncertainty the diagnosis caused and said it broke her heart to see her husband’s condition deteriorate so rapidly.
Anton was later diagnosed with Primary Progressive MS, a more severe form of the disease. “It felt like the rug was pulled from under me because it disqualified me from the trials where the treatment was free and I knew how much the medication costs,” he stated.
Medication prescribed by Dr Frost managed to halt the aggressive progression of the disease that had by then affected Anton’s legs and his mobility, to the point where he uses a special walking frame at home or a wheelchair when going out.
“It has affected me psychologically, my self-worth took a knock because I need assistance and cannot provide for my family like I used to,” he stated.
The worst and the most heartbreaking, said Anton, is that he cannot pick his beloved little son up, carry him around and play with him.
“I found other ways to spend quality time with him, building puzzles, sitting with him when he plays outside or reading to him, and it breaks my heart seeing other people picking him up, knowing I can’t do it.”
staggering costs
Anton was medically boarded as result of his condition, and although he receives a small income from two policies it has affected the family’s finances greatly.
Carla started a BackaBuddy campaign to raise funds for his treatment, which costs R60 000 per session, something that was not covered by the medical aid they were on at that stage. This campaign wasn’t successful, but luckily they found a new medical aid that does cover the cost of the treatment every six months.
“Although the medical aid covers the treatment, something we are greatly thankful for, it doesn’t cover all the medical expenses or the cost of petrol,” Carla said. “Anton also needs other expensive medication every day.”
Experiencing all these challenges, said Anton, taught him some important life lessons, such as having faith and trusting in God. He is also very grateful to a good samaritan who donated an inverter to make life easier and to William Morton of Walkerbay Sparkies who installed it free of charge.
Anton also needs extensive intensive physiotherapy to assist with mobility, but this is very costly, and transport to and from the physiotherapist is problematic.
Despite the many setbacks he still has hopes and dreams for the future.
“I started a business selling dried fruit and nuts online and would love to see it grow. I would love to receive physiotherapy so I can get my muscles stronger and hopefully be able to walk again – even if it’s with a cane it would be better.”
Anyone who wishes to assist the couple, can contact Carla van Niekerk on 074 177 3348 or send an email to antonvn829@gmail.com.