On Friday, Victor du Plessis, 35, sadly passed away due to multiple organ failures after he suffered from various incurable diseases.
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 needed 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.
“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 was wheelchair-bound, struggled to eat and drink as a result of his brain function and was reliant on a permanent catheter, he needed around the clock care and a top tier medical aid.
Marlene said 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
Victor with his little sister, Vianca
Supporting Victor
As Victor’s medical needs were extensive, his medical aid was often exhausted at critical times, and Marlene and Vianca were often unprepared for burdening co-payments.
Reaching out to the public for support, Marlene, who had taken a second job as a sales rep to care for her son, launched a crowdfunding campaign on BackaBuddy to help cover Victor’s medical needs which costed 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”
Victor has sadly passed away
It is with sadness in our heart that we say goodbye to our little sunshine boy. Vicky past away on the 8th of July at 16h00 as a result of multiple organ failure.We would like to thank everyone that ever donated towards this fundraising campaign and followed our journey.
We would like to thank Zane and maroela media who went out of their way in supporting is and made our journey a little bit easier. Vicky was a great warrior but in the end he died with peace and love on his little face.
May his life always be an example to others, of never giving up. Rest in peace our little warrior.You will be loved always.
If you would like to attend Victor’s funeral Tuesday, 19th July 2022, at 10h45, please meet at Moepelstraat Rustenburg Oak Proteapark.
Create a crowdfunding campaign
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R314 Million.
Janique Venter, a fun-loving 4-year-old young girl from Bloemfontein, was diagnosed with stage 3 Neuroblastoma Cancer, at 6 months old.
With this form of cancer, tumours develop from immature nerve cells found in several areas of the body.
Thus far, none of the chemotherapy treatments available in South Africa has been effective for Janique, and because of the placement of her tumour, which is on the right side of her neck, surgery would be life-threatening.
Although Janique’s health is rapidly deteriorating as her tumour grows, she doesn’t know the severity of her condition or that she has cancer.
“Janique always has a smile on her face, despite the pain of the many procedures she’s had to endure since she was a baby. We can’t bring ourselves to tell our little one that she has cancer. We tell her that she has a ‘bug’, that Jesus is busy taking away” – says Janique’s mom, Nadia.
To assist the Venter family, Karin Harmse, founder of Arms of Mercy NPC, is on a mission to help Janique get to Burzynski Clinic in Houston, Texas, for gene-targeted therapy through antineoplaston, which has been used to treat neuroblastoma with highly promising results.
Through the launch of crowdfunding campaign on BackaBuddy, Karin is appealing to the public for support, to help cover the cost of the trip to Boston, as well as the treatment, estimated to cost over R750 000, which is Janique’s ‘last chance’.
“Janique has waited for over 15 months for her miracle and time is running out. She is very close to my heart and my heart just can’t bear the pain anymore. Please open your hearts for this cancer warrior who is in dire need of your help and share her story far and wide” – Karin
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R313 Million.
7-month-old, Baby Novah De Wet, from Aggeneys, Northern Cape, was diagnosed with Spinal Muscular Atrophy (SMA) type 1, a fatal, rare genetic disorder that affects important motor neurons in the body, responsible for movement and muscle development.
The condition which is the most common inherited fatal disease in infants can be treated with a miracle gene therapy drug, Zolgensma, available only in the US, which costs an astronomical R35 Million rand ($2.3 Million).
For a chance to receive the drug for at no cost, Baby Novah has entered the Global Managed Access programme offered by the drug manufacturer, Novartis, which has been established to offer free access to the once-off treatment to 100 patients worldwide per year in countries in which the drug is not yet approved, including South Africa.
With no guarantee that she will be selected as the one of the patients, as the program works with a ‘lottery’ system, the De Wet family have partnered with the Angel Network to launch a crowdfunding campaign on BackaBuddy, appealing to the public, and corporations for financial support during this difficult time.
“Hearing that our beautiful child has a life expectancy of just 2-years, is a sentence we just can’t accept, as we stare in our little girl’s eyes. Sleeping in my arms, we promised her we would fight for a happy ending, and that is exactly what we plan to do. While we have a steep mountain to climb, our mission is not impossible, and that is what we need to believe, to save our little supernova” – says Clement.
Novartis has approved a three year payment plan for the drug, if the family can cover the cost of the R17.8 Million ($1.2 Million) deposit, which the campaign hopes to fund.
Since the launch of the campaign, generous donors have already made contributions to the value of R13 000. Funds raised will be paid directly to the relevant institution. Donors will be eligible for Section 18a tax certificates, issued by TheAngel Network.
As baby Novah’s condition is extremely progressive, time is of the essence, says her dad, Clement.
“As a family, our dream is that our little girl can live a long, happy and healthy life. We know that with this drug, a bright future awaits our little one. We ask that you hear our hearts, share our story, and donate if you can. You will be saving baby Novah’s life, and heal our family” says Clement.
Baby Novah with her dad, Clement, mom Charene and her big sister Hayleigh
If Baby Novah is selected in the lottery, funds raised will be returned to the donors or used to fund another patient with the same condition.
Support baby Novah by making a donation on BackaBuddy:
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R312 Million.
Aaron Lipschitz (7) from Sea Point, Cape Town, is the first child in South Africa to be diagnosed with Interleukin-12 Receptor Defect, a rare, genetic condition that affects the immune system.
In simple terms, the cells in Aaron’s immune system do not communicate effectively and as a result he is unable to fight infections.
Of the few known cases worldwide, Aaron is the only child who is unable to tolerate any food without becoming very ill. Before his bone marrow transplant in August 2018, the only nutrition he has been able to cope with was a hypoallergenic formula called Neocate LCP. He is still primarily fed via a MIC-KEY feeding port in his stomach.
Undergoing a Bone marrow transplant
As there is currently no cure for Aaron’s condition, the only way for him to overcome his recurrent infections and survive this condition, was to have a bone marrow transplant.
To help cover the costs of finding an international bone marrow donor, as well as assist his family with his ongoing medical expenses, a campaign was created on crowdfunding platform, BackaBuddy.
Finally in August 2018, Aaron’s family got the call they had been waiting for.
With the support of The South African Bone Marrow Registry, a 100% bone marrow match was found for Aaron overseas. At only 3 years old, Aaron underwent chemotherapy to destroy his current defective immune system before it was replaced with the donor’s bone marrow.
The risky procedure was met with complications when Aaron developed a very rare reaction to the new bone marrow, called a Cytokine Storm, which landed him in Red Cross ICU for a month. The fact that he was able to survive the transplant is a miracle, says Aaron’s mom, Taryn.
“Aaron is a fighter in the true sense of the word. His doctors were trying to prepare us for the worst and I told them to wait and see…Aaron survived against all odds.He has the most incredible zest for life and thirst for knowledge.” – says Taryn.
Since the bone marrow transplant, Aaron seems to be getting fewer infections but unfortunately his immune system has not reconstituted as well or as quickly as doctors would have liked.
To boost his immune system, he needs to have weekly immunoglobulin treatment. Aaron has slowly started to be able to tolerate small amounts of oral food since his bone marrow transplant.
“Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead. Whenever we feel that we are getting close to the summit of this mountain,the mountain seems to become higher. All we can do is keep our heads down and keep putting one foot in front of the other.” – says Taryn.
Currently, Aaron’s condition is more stable, but he still has extensive medical needs:
Aaron currently survives on formula administered 3-4 times a day via a MIC-KEY feeding tube in his stomach.
He still requires weekly immunoglobulin infusions where a tiny needle is inserted under the skin in his stomach to administer the infusion.
Aaron is in occupational therapy, physiotherapy and play therapy to help support him and allow him to lead the most normal life possible.
Aaron’s little sister, Eden
Like most parents, Taryn and Steven had always dreamt of having a second child, giving Aaron an opportunity to be a big brother.
After extensive genetic testing concluded that Aaron’s condition was most likely a random phenomenon that didn’t have a genetic cause, the Lipschitz family were very confident, albeit not 100% certain, that they would have a healthy baby.
“Of course we naturally had concerns that a second child would have a similar condition to Aaron although his exact diagnosis is still unknown. We know that he has a Primary Immunodeficiency but the subtype or variant seems not to have been documented yet worldwide.” – says Taryn
Welcoming their beautiful daughter, Eden into the world on the 27th September 2021 the family never in their ‘darkest nightmares’ imagined that she would be even sicker than Aaron ever was as a baby.
“Within a couple of weeks it became clear that Eden had significant difficulty tolerating feeds and displayed extreme pain and severe vomiting after feeding. Aaron had always tolerated a very hypoallergenic formula called Neocate LCP since birth but Eden is not even able to tolerate that. As a last resort we have had to resort to TPN (total parenteral nutrition) which is intravenous feeding to keep her alive.” – says Taryn
Currently, it is unclear if Eden has the same condition as Aaron, as extensive exome sequencing has not determined the cause of Eden’s difficulties. Doctors believe that Aaron and Eden may have a new genetic variant that has not yet been recorded worldwide.
A family facing financial pressure
The financial pressure the Lipschitz family is experiencing, now managing two children with extreme medical needs, has been tremendously difficult for the family, which is on the top medical aid plan, which is expensive in itself.
Taryn, who works as a play therapist, has also not been able to return to work full-time, as Eden’s current hospital admission has been 10 weeks long.
Once-off and recurring donations to the Lipschitz family fund on BackaBuddy, have carried the family through emotionally, physically and financially, says Taryn.
“We are so blessed and grateful to be part of this community and know that help and support is available. We look at how far Aaron has come and we are filled will hope that with the community behind us Eden can also overcome the enormous challenges that lie ahead of her.”
The Lipschitz family would like to encourage all South Africans, to register as bone marrow donors to give children like Aaron and a second chance at life.
To date, the SABMR has helped save the lives of nearly 550 patients with life-threatening blood disorders by matching them with healthy, unrelated bone marrow donors from South Africa and the rest of the world.
According to SABMR, Sustainability Portfolio Manager, Kamiel Singh, there are currently only 74 000 donors registered on the site to cater to over 57 million South Africans.
“We are urging people to go onto the SABMR website to register as a bone marrow/stem cell donor. The process is as simple as making a phone call, filling out a form and having a mouth swab taken. You could save Aaron or another person waiting for their miracle.” – says Taryn
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 44000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R500 Million.
Josh Crichton (13) from Bedfordview, Johannesburg was a micro premature baby at birth, weighing only 750 grams.
At just 7 months old, unable to reach any of his milestones, he was diagnosed with cerebral palsy, a condition that affects a person’s ability to move and maintain balance and posture.
Despite being severely physically disabled and unable to talk, Josh is a lovely, happy child, always joining in with a laugh when someone makes a joke.
“He is truly so strong and a huge inspiration to all around him and always manages to smile in these trying times.” – says his mom, Denise
Josh’s mom, Denise has been at her son’s side since he was born, as he is unable to do anything on his own.
She lovingly understands him and his needs, but like any superhero mom, she could do it with some help, especially after losing her job in May 2021.
Josh Crichton is always smiling
Crowdfunding for a Carer
To help Denise hire a carer for Josh, so that she can return to work, and make a better life for the two of them, non-profit organisation, The Angel Network, has launched a crowdfunding campaign on BackaBuddy, to reach out to the public for much-needed support.
Since the launch of the campaign, over R47 000 has been raised with the help of 23 extraordinary donors, towards their target of R100 000.
Funds raised will also help Denise cover the cost of Josh’s medical aid which covers his nappies, wet wipes, syringes, operations, and the chronic medication which keeps him alive.
Josh’s medical needs are a source of tremendous stress for Denise, as his medical savings are depleting rapidly.
Hospital visits and operations have been a constant for Josh throughout his lifetime.
Josh has undergone a Nissen fundoplication surgery to treat gastroesophageal reflux disease, a gastric volvulus operation, various Botox procedures, tendon lengthening, and has been fitted with a feeding tube on two occasions.
All donors are eligible for a Section 18a Tax certificate, issued by The Angel Network.
Connect with The Angel Network
The Angel Network is an organization, run solely via the power of social media. They are a registered Non-Profit Organisation (NPO: 181-947) and Public Benefits Organisation (PBO).
Their goal is to create a gateway for giving. A platform from which helping where help is needed, is easily accessible to anyone wanting to do a little more, and give a little more.
Create a crowdfunding campaign
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R312 Million.
