Fanele Memela (6) from Durban, was diagnosed with Acute Myeloid Leukemia in March 2022, and is in desperate need of a stem cell transplant that could save her life.
As none of Fanele’s family members is a viable bone marrow stem cell donor match for the little one, the South African Bone Marrow Registry (SABMR) has activated a nationwide search to find a suitable donor.
Ramping up their donor recruitment efforts, the organisation hopes to give this twinkle-eyed Durbanite, a second chance.
Fanele is currently undergoing chemotherapy until a matching donor is found.
Her mother, Gugu Mkhulisi, says as a parent all you want to do is to help and protect your child. “However, in this instance, there’s very little I can do. I have to rely on the generosity and goodwill of others.
“It broke my heart when the doctors shared the news that none of us offered a good enough match. While this journey has been tough, it has opened my eyes to so much that I didn’t know about. I have learned about the dire shortage of black donors on the registry, which makes it so difficult for children like Fanele, to get the help they need.”
A need for ethnic donors
According to the SABMR, black donors only make up a mere 10% of registered donors. That means there is a slim chance of finding a match for Fanele and other children like her.
A patients’ best chance of finding a match is within their own ethnic group. The lack of donors of colour is not unique to South Africa, globally there is a 27% chance of people of colour finding a match, compared to that of Europeans who have a 70% chance of finding a comparable tissue match.
It is for this reason that the SABMR has launched a crowdfunding campaign on BackaBuddy, to raise funds alongside the family to bolster donor recruitment efforts.
Kapil Premchand, SABMR Sustainability and Donor Recruitment Coordinator for the KZN region says around 200 cases are referred to the SABMR annually, and the goal is to eventually be able to assist every patient.
“Our mission is to save as many lives as possible. Often, we find ourselves in a position where there is no suitable match, as is in Fanele’s case, but this doesn’t deter our efforts.
“With this campaign we aim to raise R500 000 which will help to get as many black donors as possible between the ages of 16 and 45 to sign up to the registry.”
Mkhulisi who refers to her daughter as a superhero, says Fanele has many things she aspires to and hopes that her daughter gets the second chance she wishes for.
“Her future aspirations change as often as the weather. She has recently decided that she no longer wants to be a doctor (like me), but rather a singer. She loves her little brother who is six-months old, and I would like for her to be around to spend many more years with him as they already share such a special bond.
I am appealing to my fellow black South Africans to become bone marrow stem cell donors. It only takes 3 minutes to sign up and if you’re a match, the stem cell donation process is very similar to giving blood and all the costs are covered by the registry.”
HELP CHANGE THE STATISTICS AND GIVE FANELE, AND OTHERS LIKE HER, A FIGHTING CHANCE AGAINST BLOOD CANCER.
The SABMR (NPO) was established in 1991, motivated by the concern that although bone marrow transplants were a life-saving treatment option, they were only available to patients with a matching donor in their family. Today, the SABMR searches both locally and internationally for donors, thereby making collaboration with international registries and observing universal standards of practice essential.
To date, the SABMR has helped save the lives of over 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.
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 R323 Million.
Stan Potgieter (56), a veteran from Centurion, is embarking on a healing journey beginning on 23 May 2022 at the Voortrekker Monument and ending at the scene of an attack he and his squad were led to 38 years ago in Southwest Africa.
Stan’s Story
Stan was in for a rude awakening when he reported for his compulsory military service and began infantry training at Phalaborwa-based 7 SAI. He had just turned 17.
Stan with his parents the day before he left for the border
Roughly a year later, deployed to the north of Namibia, on the Angolan border, Stan began performing patrols with his squad into hostile territory and had terrifying encounters. On one occasion, Stan recalls a rifle grenade being fired at the squad, bouncing between them without detonating.
The attack
Whilst on a routine patrol on 23 June 1984, Stan’s life changed forever, in the blink of an eye.
A local interpreter, Thomas, led Stan’s four-man patrol to where there was an alleged SWAPO presence. They had crossed a road known as ‘Willie se witpad’, venturing about 32 kilometres from the base and searched a deserted kraal.
Resting briefly, they continued the patrol. It was infantry practice after a rest, to rotate the order of patrol, giving everyone a chance to walk ‘on point’.
Stan was next up ‘on point’ but was chivvied into second by his best mate, Johannes Theunissen, nicknamed ‘Piesang’, who pulled rank as the Corporal in charge. Stan was still rankled by this break from routine when all hell broke loose.
A rifle grenade fired at the squad detonated against a branch, killing 21-year-old ‘Piesang’ instantly. A hail of AK 47 and SKS rifle fire cut down Hennie, another squad member, as he sought cover.
Willie, the other member, had a phosphorous grenade detonated on his webbing, resulting in severe burns to his body. Stan, not realising the extent of his comrades’ wounds, shouted out and fired his R4 at the attackers.
Stan was completely unscathed.
After taking stock of their situation, Stan recovered the radio from beneath Piesang’s lifeless body and radioed to report the ambush and request a casualty evacuation helicopter. He then tore his shirt into strips to bind his comrades’ wounds as best he could and removed his T-shirt to cover his best friend’s head, hiding the wounds that had ended his life.
An hour later a South African Super Frelon helicopter arrived, hovering over the soldiers, to collect Piesang’s body and the wounded soldiers.
As Stan was not wounded, he was told that he could not be ‘casevaced’, and had to stay put. The chopper took off and flew away, leaving a barely 18 year old scared and traumatised ‘troopie’ alone in hostile territory.
Around lunchtime, a Koevoet [SA Police] patrol arrived on the scene. A request to return to his HQ with them was also denied because the ‘infantry looks after their own.’ For a second time, Stan was left alone.
Stan in training
He passed the time by studying the ambush site. Rifle grenades were still lying neatly in a row, ready to be used in an instant. In the late afternoon, seven hours after the ambush, an infantry ‘Buffel’ troop carrier eventually arrived to pick him up.
Getting back to base in the dark, he was told to report to the unit chaplain who read a passage from the Bible, and said a prayer and that was that. He spent the evening drawing maps, writing a report and contemplating why his friend died in his place. The guilt and sadness, Stan says, were all-consuming.
Moved to a reaction unit, Stan spent the next 8 months clearing up after contacts between SWAPO and the SANDF, recovering the shattered bodies of friend and foe. The futility of war became more and more apparent.
Ruptured knee ligaments saw Stan flown back to 1 Military Hospital in Pretoria for surgery. What confused him even more, was seriously wounded SWAPO being flown out for treatment on the same flight. One day they were required to kill them and the next they did all they could to save their lives. Nothing made sense anymore. Recounting this to fellow soldiers in his hospital ward resulted in a visit by Security Police threatening to ‘lock him up for 15 years for sharing ‘sensitive information.
Eventually, Stan was subjected to sleep therapy where he was heavily sedated for days on end. He recalls waking up sobbing. After hospitalisation, he was eventually discharged G5K5 – Medically unfit.
Life after the military
When Stan left the military in 1985, he found that his medical discharge hindered his job prospects. He eventually qualified as a toolmaker to support his then-wife, Mellisa and their 2 children Sven and Miquette.
Stan with his daughter Miquette
Haunted by the ghosts of his past, Stan tried to put his life back together, but the military memories lingered in the back of his mind, affecting his relationships and mental well-being.
A difficult conversation
In 2014 Stan responded to a discussion on Jacaranda FM, which became a turning point in his life.
Asked about his military experience, Stan opened up about everything he had been through, and the mental anguish he suffered as a result. Suddenly painful emotions that lay dormant for over 30 years came to the surface.
Soon after the Good Morning Angels segment, Stan was inundated with phone calls from soldiers with shared experiences and the many families that were affected.
He then decided to launch his own non-profit organization, Wear it for the wounded, to raise awareness and funds for veterans living with Post Traumatic Stress Disorder, and to comfort families of fallen soldiers.
“It is essential for veterans to realise that they are not alone and that they should open up and share their past traumas with family and friends to face their trials and tribulations,” says Stan
A Healing journey
Under the banner of ‘Wear it for the wounded’, Stan has decided to embark on a 2500km journey, starting at the Wall of Remembrance to fallen soldiers at the Voortrekker Monument on the 21 May 2022, to the scene of the ambush in Ondangwa, Southwest Africa on 23 June 2022.
Stan at The Voortrekker Monument
Travelling on an electrically assisted pedal tricycle, Stan hopes to raise R100 000, through a crowdfunding campaign launched on BackaBuddy.
Since the launch of the campaign over R12 000 has been raised with contributions from 17 donors, which will be used to cover stan’s costs and to help families and victims of PTSD
“We need to show our solidarity with those who have fought, suffered and died for a better life for us all. Irrespective of whose side they were on, these men and women answered the call to defend what they, at that time, held dear. Victims one and all. Helpless pawns in politicians’ games.
They deserve our thanks, love, help and support. As do the first responders, Police, Paramedics or Health workers, who deal with traumatic events almost daily.
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 risen over R327 Million.
On the 29th of May 2020, Lisa (41) and Russell Swanepoel (38) from Berea, Durban, who for years longed to be parents, finally welcomed their twin daughters, Stevie-Mae, and Lily-Jean, into the world.
A few months later, the twins were diagnosed with epilepsy after suffering multiple seizures. Then the unexpected happened: Stevie-Mae passed away in her sleep, leaving her parents heartbroken and with many unanswered questions.
Doctors initially thought that Stevie-Mae had passed away due to SUDEP (Sudden Unexpected Death in Epilepsy), a condition whose root cause is not well understood.
In the depths of grief over the loss of Stevie-Mae, and terrified of what this meant for Lily-Jean, the family began a Genetic sequencing journey, which revealed that the twins were born with Dravet Syndrome, a rare, drug-resistant iteration of epilepsy.
The signs of Dravet Syndrome in Stevie-Mae had gone unnoticed, but her passing has given her sister, who is now 2 years old, a fighting chance. This now becomes Lily-Jean’s story.
Currently, Lily’s medical needs are best described as chronic and evolving. She needs constant monitoring as leaving her alone could prove fatal and close attention is paid to her medication.
“Lily’s days are variable as this syndrome has huge effects on her tiredness and 2 of the 4 drugs she takes have a huge impact on her appetite. So eating and sleeping is not a regular or sure thing for her to be able to easily do (let alone the restricted food choices she has on her diet)”
“Someone always needs to be with Lily, particularly when she is sleeping, for her seizure activity to be monitored. Mom and dad, Granny or a carer are always ready to step in to change her environment or administer oxygen or medication to help her deal with seizures.”
“Lily is overwhelmed by tasks and challenges in certain environments. And when she gets overwhelmed (too excited, too frustrated, too tired, too hungry, too hot, too cold) she starts having myoclonic seizures and myoclonic blinks with absences. Those seizure spells can affect her significantly.” – says Lisa
Through their courageous daughter, Lisa and Russell hope to create awareness about Dravet Syndrome so that it may never go unnoticed again. Lily-Jean has a long road ahead of her as she grapples with this disorder, but she is a fighter.
“Despite all of the above, Lily-Jean wakes up every day determined to try and make the most of it and captures the heart of everybody in her path. She is a light that we refuse to let this syndrome extinguish.” – says Lisa
Crowdfunding on BackaBuddy
To support Lily-Jean as she takes on this uncommon, drug-resistant, and refractory enemy, the family have launched a crowdfunding campaign on BackaBuddy that has since raised over R170 000, with contributions from 130 donors.
Funds raised by the campaign are being used to cover:
Lily-Jean’s medical aid premiums so that her family can afford her medications, one of which has to be specially imported and approved from France
Multiple paediatrician visits (any illness can dramatically increase the risk and magnitude of seizures), and Paediatric neurologist appointments to determine Lily-Jean’s progress.
Weekly Occupational and Speech Therapy appointments to help Lily-Jean manage her early childhood development and assist us all with tools to help overcome the learning and developmental hurdles that are in her path
A specialised daily carer
Specialised foods and paediatric dietician
“The support we have received is overwhelming and humbling. Without it, we would not be able to support Lily in the way she needs to be able to deal with what an average day looks like for her. We are acutely and deeply aware of how lucky we are to have this support, and it’s made us even more aware of how other families may not have the same support, but have the same challenges”
“This is why our page and our purpose is to bring awareness to what it takes to successfully (that is different for everyone) manage complex and rare genetic disorders like Lily’s and the monster that is epilepsy. The more awareness we can raise, hopefully, the more families we can help directly or indirectly, and simply even assure them they are not alone.” – says Lisa
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 risen over R350 Million.
Shaun Phelan (23), an electrical apprentice from Stanger, Kwa-Zulu Natal, learned that his dad, Shaun (Senior), was diagnosed with chronic kidney failure in January 2020.
Just 3 months later, doctors discovered that his kidney function was less than 4%.
Hearing that her son and her husband of over 24 years were facing equally difficult obstacles was extremely difficult for Sharon and her family.
“I watched my diabetic husband, who was always active, go through a bypass, then dialysis, and then he was completely reliant on a wheelchair. Then Shaun got sick, which was a major shock, as he had always been healthy.” – says Sharon.
Sadly, Shaun Senior (55) who was a wonderful and giving person, succumbed to kidney failure on 5 October 2021, as he was ineligible for a kidney transplant due to his health problems.
In the absence of his dad, who he loved dearly, Shaun was determined to defeat his diagnosis and was fully focused on his health. Shaun underwent dialysis 3 times a week for up to 6 hours.
“Mom was my Miracle”
Facing the reality that Shaun’s only hope of a ‘normal and functioning’ life, was to have a kidney transplant as soon as possible, Sharon dutifully volunteered to get tested, hoping to beat the 50/50 odds of becoming a kidney donor for her son.
Undergoing blood type, crossmatch, and HLA testing (tissue typing), Sharon was elated to learn that she was a perfect match for Shaun.
“I am really happy that I am a match for my son as this means that he can get the transplant sooner and not have to wait for a match to be found. I hoped that the transplant would be a success so that he can carry on and live his dream and he would not be held back as he was at that moment” – says Sharon
Saving Shaun’s life
With a donor match secured, Shaun was scheduled to undergo his kidney transplant at Netcare St Augustine’s Hospital on 23 June 2022.
To help cover the donor costs not covered by Shaun’s medical aid, as well as Shaun’s transplant and living expenses before and after the life-saving transplant, Sharon had launched a crowdfunding campaign on BackaBuddy.
A kidney transplant will save Shaun’s life
Since the launch of the campaign, over R69 000 has been raised with kind contributions from 50 donors.
Update
Thank you for your support and for walking the transplant journey with me. I couldn’t have done this without you! The transplant took place on the 14th of June, 2022. The transplant was a success, and the doctors are happy with my progress. My blood levels are coming back to normal slowly.
My mother is also doing well and is recovering well. I am on numerous different medications to help with anti-rejection, blood pressure, etc. And medication is really costly. The bills are also starting to come in now from the hospital.
The transplant has impacted my family’s and my life in a positive way as I have not had the need to do dialysis since the 13th of June 2022 because the transplanted kidney has worked immediately after the operation being done. If anything, this journey has taught me one thing is that the support from your friends and family helps with a speedy recovery and makes everything a bit easier to cope with.
The donations so far have helped me to pay urgent bills that needed to be paid and have made life a bit easier in terms of stress levels.
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 risen over R350 Million.
Liané Roux, a 10-month old baby from Secunda, Mpumalanga has faced a number of serious health issues since the start of her life, as a result of being born with 3 congenital heart defects.
Concerned that their daughter (who was 4 months old at the time) was showing signs of a fever, had difficulty breathing, and was tired all the time, doting parents Ashley (26) and Quintin Roux (36), took her to their local hospital, where she was initially diagnosed with a Grade 5 Cardiac Systolic Murmur.
A week later, after seeing a heart specialist at Steve Biko hospital, the family learned that Liané’s condition was much greater than anticipated, discovering that she was born with 3 congenital heart defects: VSD, DORV and TGA.
Liané’s condition in more detail:
Ventricular septal defect (VSD), a hole in the heart, is a common heart defect that’s present at birth. The hole (defect) occurs in the wall (septum) that separates the heart’s lower chambers (ventricles) and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder.
Double-outlet right ventricle (DORV), occurs when two large blood vessels don’t connect to the heart normally. In infants born with this condition, the main artery that carries blood from the heart to the body (aorta) and the artery that directs blood from the heart to the lungs (pulmonary artery) connect partially or completely to the right lower heart chamber (ventricle). Sometimes these blood vessels are also reversed from their normal positions.
Transposition of the great arteries (TGA), is a serious, rare heart problem in which the two main arteries leaving the heart are reversed (transposed). Source
Mending Liané’s Heart
As a result of her condition, Liané was at high risk of getting respiratory infections and ultimately suffering heart failure, when her parents approached the Maboneng Heart and Lung Institute in Johannesburg, the only hospital willing to perform the life-saving surgery she needed.
Under tremendous stress, realising that almost R1 Million rand was needed to save their daughter’s life, the Roux family launched a crowdfunding campaign on BackaBuddy, hoping to secure the astronomical cost of the surgery, as they don’t have medical aid.
Proud parents Ashley and Quintin holding Liané
“Words cannot describe the level of fear and heartbreak we felt hearing the words ‘heart failure’, knowing that we had a financial mountain to climb and a race against time, to save the life of our little angel.” – says Quintin
With generous support, the campaign raised almost R600 000, with contributions from 436 donors, that allowed the family to cover the first three invoices for Liané procedure.
By the grace of God, Liané successfully had her surgery on Friday, April 22 at the Sunninghill Hospital in Johannesburg.
After recovering from her surgery in the cardiothoracic intensive care unit, Liané underwent a second operation to have a pacemaker fitted, that will be able to control her heartbeat.
To support the family with Liané’s aftercare, monthly costs, and outstanding medical fees, donations are still welcome to the little one’s fundraiser, while she waits to be added to her medical aid.
“While we are not out of the woods in terms finances, we couldn’t be more thankful for the community that lovingly formed around us to help fix Liané’s heart. Without people sharing our story and shouting it loudly, we don’t what we would have done. Our little baby has a beautiful future ahead of her” – says Ashley
