Marlene Mans (52) a single mom from Rustenburg, Johannesburg, has dedicated her entire life to caring for her son, Victor du Plessis (35), who was born with special needs.
For as long as Marlene can remember life has been a struggle for her son, who has lived between home and the hospital since he was born.
Always fighting an infection, Victor’s symptoms need to be monitored closely to avoid devastating consequences.
“When the nurses handed Victor to me when he was just minutes old, I stared into his eyes, and unknowingly gave him the most appropriate name. A ‘victor’ is someone who has overcome an adversary. Considering the battles he’s fought and conquered, it’s a perfect fit” – says Marlene
In his lifetime, Victor has suffered 3 strokes, battled diabetes, epilepsy, bleeding on the brain, and a multitude of rare, incurable diseases. Contracting Covid-19 last year, Marlene says they almost had to say their goodbyes.
“Many times doctors gave up on Victor and told us there is little hope, but every single time our Vicky has pulled through. He’s a champion” – says Marlene
A breakdown of Victor’s rare conditions
- Trisomy 21: A genetic chromosome 21 disorder that causes developmental and intellectual delays.
- Basal ganglia calcification of the brain: A very rare condition that happens when calcium builds up in your brain, usually in the basal ganglia, the part of your brain that helps control movement.
- Schizophrenia: A serious mental disorder in which people interpret reality abnormally, which leads to hallucinations, delusions, and extremely disordered thinking and behaviour.
- Congenital Rubella Syndrome (CRS): A condition that affects a person’s heart and mental ability.
- Coeliac disease: A condition that causes hypersensitivity to gluten, which leads to difficulty in digesting food.
- Malabsorbtion syndrome: A condition that prevents absorption of nutrients through the small intestine.
- Polyglandular autoimmune syndrome: A rare and complex recessively inherited disorder of immune-cell dysfunction, which causes endocrine gland and gastrointestinal dysfunctions.
Recently Victor was diagnosed with Dementia (mild decline) and Alzheimer’s (stage 3), which was a particularly difficult pill for his loved ones to swallow.
“Of all Victor’s conditions and ailments, this was perhaps one of the hardest to come to terms with. I can’t picture a day when Victor might not recognize me, his sister Vianca, and his nurses who have become an extended part of our family. We all love our little teddy bear” – says Marlene
Victory for Victor
As Victor is wheelchair-bound, struggles to eat and drink as a result of his brain function and is reliant on a permanent catheter, he needs around the clock care and a top tier medical aid.
Marlene says that without her daughter, Vianca (32), who has lovingly sacrificed her independence, and much of her salary every month to care for her big brother, she doesn’t know how they would have made it this far.
“Vianca is the most selfless person I have ever met. She has been with me every step of the way, and in many ways is Victor’s second mom. She takes him everywhere she goes, shaves him, bathes him and checks up on him. This she does out of pure love, not an obligation” – says Marlene
As Victor’s medical needs are extensive, his medical aid is often exhausted at critical times, and Marlene and Vianca are often unprepared for burdening co-payments.
Reaching out to the public for support, Marlene, who has taken a second job as a sales rep to care for her son, has launched a crowdfunding campaign on BackaBuddy to help cover Victor’s medical needs which cost about R10 500 a month.
“With Victor’s chronic medication, specialist visits, daycare and dietary needs, his medical expenses are a mountain we try to conquer every month. It’s been difficult physically, emotionally, and financially” says Marlene
While no stranger to hard work and late nights, Marlene says she didn’t picture working this hard at her age to care for her son, but says “it’s what any mom would do”.
“No matter how stressed our situation becomes, it’s all worth it when Victor comes back from the clinic with a paper flower he’s made and a beaming smile on his face. I always say God has put us on this path for a reason, to teach us patience and humility”
Make a once-off, or recurring donation to Victor on BackaBuddy:
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“Please support us in caring for this special young man, and please share his story with your loved ones. I have faith that together we can make a small difference in Victor’s life.” – says Marlene
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