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
https://www.backabuddy.co.za/karin-harmse
https://pos.snapscan.io/qr/KarinHarmse
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 The Angel 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.
https://www.backabuddy.co.za/baby-novah
https://pos.snapscan.io/qr/baby-novah
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.
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.
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.
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.
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
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.
https://www.backabuddy.co.za/samantha-parrish
https://pos.snapscan.io/qr/JoshandDenise
All donors are eligible for a Section 18a Tax certificate, issued by 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.
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.
At the age of 25, Jayce De Villers (26) from Nelspruit, now working as an English teacher in Phnom Penh, Cambodia, finally embraced his true gender identity.
Born in a woman’s body, and sensing an attraction to the same sex, Jayce came out as a lesbian at the age of 12, but deep down sensed that he wasn’t being true to his authentic self.
“I knew something was wrong.. something was missing… something was not right. My past relationships never worked out due to my internal personal struggles,” says Jayce
Starting bodybuilding in 2018, as a vehicle to gain confidence (and mass), Jayce began entertaining the voice in his head telling him to embrace the man he always knew he was on the inside.
Jayce has finally embraced his true gender identity.
For the last 3 years, Jayce has been taking testosterone, which made a tremendous impact on not only his physical appearance but his mental health, too.
“From being masculine to having facial hair (still struggling) to my voice changing. I love what difference it has brought into my life, living in my own skin. But of course, there’s a lot still to accomplish before I would be okay with looking into the mirror and loving what I see.” – says Jayce
Taking strides towards self-actualization, Jayce has decided to take a giant leap, with the launch of a crowdfunding campaign on BackaBuddy, to fund his top surgery in Thailand, estimated to cost R100 000.
“I hate to admit it but my breasts are something that kills me daily. To see the straps of my sports bra kills me. To wonder if my sports bra is showing underneath my button-up shirt kills me. To not swim at a beach because I don’t want another person coming to me and asking me why I wear a bra – kills me. I dream of the day where I can walk freely without a shirt and with confidence take a dip in the ocean or swimming pool with my beautiful wife.” – says Jayce
Jayce and his wife, Leandri
Jayce hopes that by sharing his story, he will not only be at home in his body, for the first time in his life but give other trans individuals the courage to live their truth.
“Having this surgery will finally grant me the freedom I have craved so desperately my whole life. Please open your heart to my story, and join me on this journey, whether your participation is a donation, a share, or a kind comment. This gesture of kindness and respect will mean the world to me, and empower others to take a step away from darkness, insecurity, self-loathing and into the light”
Jayce is ready for his top surgery.
“I’ve honestly never thought I would get things started in regards to Top Surgery and I’ve always envied a lot of people who put things in motion. Everyone before me and everyone after me who follows their hearts and lives a life worth living to themselves is an inspiration .” – says Jayce
https://www.backabuddy.co.za/jayce-de-villiers
https://pos.snapscan.io/qr/JayceDevilliers
“The road to Gender Affirming Healthcare is not an easy one. Gender dysphoria is real and in certain cases results in death due to mental wellness. Medical Aids need to realise that this journey is not cosmetic. It takes true wisdom to fathom the unique difference between sex and gender.” – says Leila Ebrahim, from Gender DynamiX
Gender DynamiX (GDX), established in 2005, is the first registered Africa-based public benefit organisation to focus solely on trans and gender diverse communities. What started as a mere vision, slowly grew into a grassroots organisation. GDX has since become an institutionalised non-profit organisation (NPO) that is fundamental to the development of the trans and gender diverse movement(s) in South Africa and across southern Africa.
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.