Miane Swart (9) from Witbank, Mpumalanga, faces a relentless battle against PCDH19 epilepsy, a rare and severe form of epilepsy. Since she was a baby, Miane has endured countless seizures, leaving her with the cognitive abilities of a much younger child. Now, her family seeks the community’s support to fund a crucial surgery that could dramatically improve her quality of life.
In 2015, what seemed like a typical day for Joleen Swart and Rickey Greyling turned into a nightmare that would forever alter their lives. Their baby girl, Miane Swart, only seven and a half months old, suddenly stopped breathing around 10 PM on June 28. Her tiny body turned purple, and her parents frantically tried to revive her as they awaited the ambulance. Rushed to Cosmos Hospital, Miane was resuscitated and initially diagnosed with a minor chest congestion. However, their relief was short-lived.
On the drive home, Miane’s breathing ceased once again. By the next morning, the young child experienced her first seizure, marking the beginning of a gruelling journey for the family. Over the next three years, countless tests and hospital visits eventually led to a diagnosis of PCDH19 epilepsy, a rare and severe form of the condition that defies conventional treatments.
Caption: 9-year-old Miane Swart
Now approaching her 10th birthday, Miane’s struggle with epilepsy has been relentless. The disorder has severely impacted her development, leaving her with the cognitive abilities of a three-and-a-half-year-old. Each seizure she endures deprives her brain of oxygen, causing further damage. Despite numerous medical interventions and medications, her seizures remain uncontrolled, placing her at constant risk.
Miane’s ongoing battle with frequent seizures has taken a significant toll on her brain, and her parents are desperate to find a solution. Her condition requires continuous monitoring and immediate intervention during seizures to prevent serious harm or even death. The potential breakthrough they’ve been hoping for lies in the implantation of a Vagus Nerve Stimulator (VNS), a device that functions like a pacemaker for the brain, helping to regulate its electrical activity and reduce the frequency and severity of seizures.
Caption: 9-year-old Miane Swart
Unfortunately, the cost of this life-saving procedure is a staggering R370,000, and their medical aid will only cover a small portion, leaving a shortfall of R300,000.
The family has launched a campaign on BackaBuddy to raise the necessary funds for Miane’s surgery.
In an interview with WITBANK NEWS, Joleen spoke about the emotional and physical toll this journey has taken on their family. “There are days when we feel overwhelmed and want to give up, but we have to stay strong for our children. Rickey is our rock, holding us together through the toughest times. Our faith keeps us going, believing that we were chosen for this path and that we’ll see it through.”
To date, the campaign has raised R209 000 from 69 generous donors, but they still have a long way to go to reach their goal. Miane’s mother has also had to switch to a different medical aid to cover the cost of her medications, which still amounts to over R3,000 per month out of pocket.
The courage and resilience of Miane and her family is an inspiring story of hope in the face of adversity. As they prepare for the upcoming surgery, they remain hopeful that the VNS will be the key to a brighter future for their beloved daughter.
To support Miane for her VNS surgery , visit her BackaBuddy campaign:
Caption: Help give 9-year-old Miane Swart a better life
Update from the Family:
“Thank you for your incredible support for Miane. Your generosity has brought us closer to booking her VNS implantation operation. Thanks to 69 compassionate donors like you, we’ve raised R209,330 so far.
Miane’s journey has been tough, but your kindness brings hope and healing. Recently, despite battling flu and irritability, her foot wounds are healing, and she’s getting better sleep with new medication.
We still need more funds to cover the operation costs. Your continued support can make all the difference. If you could share Miane’s story with others, it could inspire further generosity.”
Chief Vulithuba Sangoni, the founder of The Icon’s Journey Marathon Challenge, has confirmed a new partnership with various stakeholders in preparation for the fourth edition of the Icon’s Journey Marathon, scheduled from July 14 to 21. This year’s marathon promises to be an extraordinary event with several exciting components aimed at promoting social change and community involvement.
The 400 km Iconic Challenge
One of the standout events of this year’s marathon is the 400 km Iconic Challenge, which will take place along the World’s Longest Liberation Route. This gruelling challenge will feature 12 social runners, known as “Icons 4 Change,” representing eight provinces. These dedicated runners will cover a demanding distance of 400 km over eight days. The journey is divided into seven consecutive 42.2km marathons, culminating in a 103 km run on the eighth day. This route has been declared by the National Heritage Council as the Eastern Cape Resistance & Liberation Heritage Route.
“Starting will be at Fort Hare University in Alice, touching Fort Beaufort, Whittlesea, Komani, Cofimvaba, Ngcobo, Clarkebury, Baziya, Mqhekezweni, Qunu and Qokolweni, and finishing at Nelson Mandela Museum, Bhunga Building in Mthatha,” Sangoni told the Mthatha Express (NEWS24). For the first time since launching the initiative in 2021, they will have a representative from eight of the nine provinces, including Lukhanyo Ziphethe from the Northern Cape, Reggie Gebuza from the Eastern Cape, Masamuel Mayana from the Free State, Themba Mkhangeli from the Western Cape, Nkosi Vulithuba Sangoni from the Eastern Cape, Abigail Lombo from KwaZulu-Natal, Mongezi Plank from the Eastern Cape, Miyelani Magaza from Mpumalanga, Sithembiso Soyaya from the Eastern Cape, Nic Shelver from Gauteng, Enock Kgoete from Limpopo, and Tebogo Malebatsi from Gauteng.
Fundraising for a Cause
This year, the runners are challenging 4,000 South Africans to pledge R100 each on their crowdfunding campaign on the BackaBuddy platform. Their goal is to raise R400,000, which will benefit over 30,000 school children nationwide.
Gala Dinner Fundraiser
On July 12, the Nelson Mandela Museum and Absa will host a fundraising gala dinner at the Bhunga Building. This event aims to support the 400 km Iconic Challengers in reaching and exceeding their fundraising target. Chief Sangoni noted, “On July 12, Nelson Mandela Museum and Absa will host a fundraising gala dinner at Bhunga Building, in an effort to assist the 400 km Iconic Challengers to reach and exceed their target, a unique event in its own right that sees traditional leaders, political and private sector leaders, schools, and members of the media under one roof to welcome the 400 km participants.” Ten-seater tables will be sold for R5,000, with the proceeds going towards the 400 km iconic challenge bag.
Hiking Event
Returning for the fourth time is the popular hiking event, scheduled from July 19 to 21. This 35 km hike over two days will take participants from Hluleka Nature Reserve to Hole in the Wall in Coffee Bay.
Cycling Route Challenge
On July 20, participants will experience a reverse cycling route, taking daring cyclists on a journey across two Kingdoms, from Mpondoland to Thembuland. This 61 km road bike event will start at 07:00 from Ntlaza Caltex Garage, travel via R61, and finish at Port St. Johns Stadium.
Running Event
The running event will take place on July 21, rounding off the series of athletic challenges.
Entry Information
Entries for the marathon are still open online until midnight on Sunday, June 30. This date also marks the closing for those wishing to receive one of the 500 free Iconic t-shirts. After June 30, physical entries can be obtained from the Nelson Mandela Museum, Absa branches in Mthatha, King Sabatha Dalindyebo Local Municipality (KSD), and Port St. Johns (PSJ) Municipality, the Department of Sport, Recreation, Arts and Culture (DSRAC), Savoy Hotel, and Buffalo Toyota.
The STEPS ‘Next Steps to RunFree2030 Webinar,’ held on World Clubfoot Day, Monday, 3 June 2024, was a powerful gathering that addressed the pressing economic and social factors contributing to untreated clubfoot. This congenital condition, medically known as congenital talipes equinovarus, twists one or both feet inward and downward, making them rigid and challenging to move into the correct position. While treatable, clubfoot remains a significant issue in regions like Southern and East Africa, where it affects approximately 1 in 500 children born each year.
The Reality of Clubfoot in Southern Africa
In Southern Africa, an estimated 11,000 children are born with clubfoot annually, with around 2,000 cases in South Africa alone. The economic burden posed by untreated clubfoot is substantial. Yulisha Naidoo, a Masters of Public Health candidate at the Health Economics Unit at the University of Cape Town, highlighted this during the webinar. She emphasised how untreated clubfoot imposes an avoidable financial strain on South Africa’s economy. According to research by UNICEF, more than half of children with disabilities never attend school, leading to missed employment opportunities and perpetuating a cycle of poverty.
“South African families with children with disabilities incur higher health costs, pushing them deeper into poverty and increasing reliance on government and social welfare grants. This ultimately increases the burden on the government and the taxpayer in the long run,” Naidoo told SA Lifestyle Magazine.
The Broader Implications
The marginalisation and stigmatisation faced by individuals with untreated clubfoot are deeply concerning. Professor Arnold Christianson, Head of the Division of Human Genetics at the University of the Witwatersrand, drew parallels between the marginalisation experienced by clubfoot sufferers and that faced by HIV/AIDS sufferers in the 80s and 90s. He noted that congenital conditions like clubfoot often do not receive healthcare priority in South Africa, impacting individuals’ right to human dignity.
Dr. Marilize Burger, an Associate Professor at Stellenbosch University’s Faculty of Medicine and Health Sciences, explained that while the exact cause of clubfoot remains unknown, environmental and genetic factors potentially play a role. She emphasised the critical importance of early intervention and treatment, highlighting risks such as prescription drug use, smoking during pregnancy, maternal exposures, and family history. Dr. Burger also noted the higher prevalence of clubfoot in low and middle-income countries and significant regional variations.
Watch video here: https://www.youtube.com/watch?v=hBgUKl0yJxQ
A Call to Action
Karen Moss, Founder and Executive Director of STEPS, a dedicated non-profit organisation supporting families affected by clubfoot in Southern Africa, highlighted the cost benefits of clubfoot treatment. “The STEPS Clubfoot Care programme works in partnership with health professionals and specialist clinics in the South African state health sector to bridge the gap in resources and improve successful outcomes. For one child with clubfoot, it costs STEPS just R2500 to support their treatment over four years. Successful treatment allows a child to walk properly, attend school, and positively contribute to society as they get older. Not being able to treat children with clubfoot is economically counterproductive, leading to greater long-term expenses from unemployment and long-term healthcare dependency, not to mention the mental health implications of not being able to fully participate in society. It is unfortunately a heartbreaking reality that many South African families, especially in rural areas, cannot afford regular clinic visits for this treatable condition.”
Webinar chair, Associate Professor Jacques du Toit from the University of Stellenbosch, emphasised the importance of collaboration among all stakeholders during these times of significant global austerity challenges. By working together, we can ensure continuous and improved treatment for this vulnerable group of patients, aiming to run free from disability by 2030.
Global Clubfoot Initiative, an umbrella body of clubfoot organisations, relaunched RunFree2030 on World Clubfoot Day which was on 3 June 2024. The initiative aims to provide essential treatment to children with clubfoot living in resource-restricted countries using the Ponseti method—a 95% effective, cost-effective, and non-invasive treatment involving a series of casts, gentle manipulation, and braces.
In 2023, STEPS supported 4,703 children, including 1,162 new patients enrolled, across 40 partner clinics in South Africa. Despite these efforts, this only addresses half of the estimated 2,295 new cases annually, highlighting the need for more critical support. The organisation is calling on South Africa’s private sector to help raise R1 000 000 to supply essential clubfoot braces to even more children, with braces costing between R3,000 and R8,000 each.
How You Can Help
To sustain its efforts, STEPS invites everyone to join their “Stepping Up” initiative through BackaBuddy, aiming to recruit sustaining donors to provide regular support. “By using the successful individual giving Campaign model, where each person recruits five monthly donors, and those donors do the same, we can mitigate and prevent severe lifelong disability quickly and more effectively,” concluded Moss.
The Marine Mongrels are set to embark on an exciting journey to Australia, representing South Africa in the World Lifesaving Championships. This incredible team, hailing from the esteemed Marine Lifesaving Club in Durban, is led by the world-class sweep Gary Brummer. They have trained tirelessly, demonstrating unparalleled dedication and spirit, and now, with Jenn Seady’s passionate support, they hope to rally the nation behind them.
A Pillar of Strength and Inspiration for Surfboat Rowing in South Africa
Jenn Seady, a devoted advocate for surfboat rowing, has recently reached out to share her joy and to rally South Africa to support the Marine Mongrels. Jenn’s connection to the sport runs deep; it has been her lifeline through two bouts of cancer. Currently undergoing treatment, Jenn finds solace and inspiration in the team’s journey, receiving regular updates that lift her spirits on the darkest days.
In her heartfelt message to Good Things Guy, Jenn shares the exhilarating nature of surfboat rowing. “There’s a sport called surfboat rowing, which is part of Lifesaving. Apart from being super fit, you also have to be a little nutty to partake in this rather eventful, occasionally dangerous rowing sport. Four team members row a boat through the waves out to sea, turn around, and race back, hopefully catching waves in the process,” she explains. “The sweep steers the boat from the back, and the team sits with their backs towards the waves. Timing, skill, and a whole lot of trust in your team are required. It is the ultimate team sport where you take on the ocean and is one of the greatest tests of endurance.”
For the past four years, surfboat rowing has been Jenn’s passion and driving force. She describes how, after competing in the 2022 Lifesaving Nationals, she was diagnosed with cancer. Despite undergoing treatment, Jenn continued to row, even competing in the 2023 Nationals and securing second place with her team. Her determination and love for the sport kept her going through the toughest times.
In June 2024, Jenn’s dream comes closer to reality as the Marine Mongrels, an all-female team, prepare to compete in the World Champs of Lifesaving on the Gold Coast. This marks a historic moment for South African surfboat rowing, as it is the first time a ladies’ team will represent the country in Australia.
The Marine Mongrels’ journey has not been easy. They have faced early morning training sessions, full workdays, and numerous challenges along the way. Despite their dedication, they still need support to cover accommodation costs, nutrition, and vehicle hire. Jenn, who has been living her dream vicariously through one of the team members, shares how their updates and videos have lifted her spirits and inspired her during her treatment.
“This team needs South Africa’s support,” Jenn urges. “They exude every possible quality of great sportsmanship. Their kindness knows no bounds. Their focus, trust, love, and dedication towards their team and sport are admirable. Let’s make the Marine Mongrels great!”
Jenn’s call to action is a testament to the incredible bond within the lifesaving community. The Marine Mongrels have not only demonstrated their athletic prowess but also their compassion and sportsmanship by supporting Jenn through her journey.
To support the Marine Mongrels and help them achieve their dream, Jenn encourages everyone to contribute to their BackaBuddy crowdfunding campaign where they have already raised over R11 000 of their R300 000 goal with the help of 18 amazing donors. Your donations will ensure that this remarkable team can represent South Africa with pride on the world stage.
Jace Hilse, known as Super Jace to his loved ones, is a 4-year-old remarkable young boy from Krugersdorp, Gauteng, whose imagination knows no bounds. From the moment he was born on 19 March 2020, his family affectionately called him their little superhero. Jace’s favourite activities include playing the role of a superhero or a first responder, always eager to save the day with his boundless energy and infectious enthusiasm. Now Jace is facing a challenge no child should ever have to endure, proving once again that not all superheros wear capes.
Pictured above: 4-year-old Jace Hilse also known as Super Jace
‘Jace was born via a natural water birth, and he literally came out with his one arm in the air like Superman and that is why we call him our superhero since birth. He has a big personality. He can be quite shy on some days. Most days he lives in his own little fantasy world where he is either a superhero, firefighter, policeman, and more recently a doctor.’ says Chante, Jace’s mum
The Easter Weekend in March 2024 brought heart-wrenching news for Jace and his family. He was diagnosed with B-cell Acute Lymphocytic Leukaemia (ALL), a type of cancer that affects the blood and bone marrow. Further complicating his diagnosis, Jace was found to be among the mere 3% of children worldwide who have the genetic leukaemia marker known as the Philadelphia Chromosome. This revelation added another layer to the already daunting battle ahead.
‘As his parents we felt like our entire world shattered on the day of his diagnosis and was extremely heartbroken. He is our entire world and all we want is for him to be healthy again.’ says Jace’s dad, Jean-Pierre
Pictured above: Jace with his parents, Chante and Jean-Pierre, and his grandparents, Lu-marie and Thinus on Christmas Day 2024
Jace’s initial bone marrow biopsy revealed a staggering 93% cancer cell presence. Yet, in true superhero fashion, he has shown incredible resilience. With each subsequent biopsy, his cancer cells have significantly decreased, and two months into his treatment, his bone marrow now shows only 0.2% cancer cells. This dramatic improvement is a testament to Jace’s inner strength and the dedicated medical care he is receiving.
‘Jace has received two cycles of chemotherapy since his diagnosis at the beginning of April 2024. His little body is very sensitive to the chemotherapy and his blood cell counts drop extremely fast due to this and then he has to have breaks from his treatment. He misses out on so much of the normal stuff that kids his age get to do, like playing and seeing his friends or going to go see family. Since his diagnosis his life now consists of home, hospital or the doctor’s room.’ Chante tells us
Pictured above: Jace with sister Monica from the hospital
However, the journey is far from over. Jace’s young body is particularly sensitive to the harsh treatments required to combat his leukaemia. After extensive consultations with global experts, his medical team has determined that immunotherapy is the best course of action. This innovative treatment offers the most promise with the least side effects, crucial for preserving Jace’s overall health and vitality. Unfortunately, the financial burden of immunotherapy is significant, even with medical insurance. The out-of-pocket expenses are substantial, and Jace requires two cycles of this therapy to have the best chance of recovery.
‘Jace is currently doing well, he is on a small break after his second cycle. He is playing at home and keeping all of us on our toes. His last tests came back to show that his cancer cells have dropped to 0.14%.’ Jean-Pierre tells us
To help alleviate the financial burden that they are facing, Jace’s family has started a crowdfunding campaign on BackaBuddy where they have already raised over R90 000 with the help of 59 incredible donors.
‘The money raised will help us to cover any of the excess costs for the immunotherapy that the medical aid won’t be able to cover.’ Chante explains
Pictured above: Jace riding his bike in the hospital play area
Jace’s family is unwavering in their mission to provide him with everything he needs to overcome this illness and reclaim his childhood. They dream of seeing him healthy and happy, back in school, and playing with his friends. The family’s goal is to ensure that Jace, their little superhero, can live out his dreams without the shadow of illness.
‘We would just like to say a huge thank you to all the donors for helping us in providing Jace with the best possible treatment. We can’t express our gratitude enough.’says Jean-Pierre and Chante
While there is no dedicated social media page for Jace, his family will be posting updates on the campaign to keep supporters informed of his progress. They invite everyone to join them in supporting Jace’s fight against leukaemia, demonstrating that not all heroes wear capes—some have ports.
In a world where every step counts, 36-year-old Robbie Gien, a sales team leader at Pnet, an online recruitment platform, from Johannesburg, is about to make each one truly significant. As an Ironman athlete since 2013, and a running enthusiast, Robbie is no stranger to pushing his limits. This year, he’s pushing them even further for a cause close to his heart—Swallow’s Nest.
Pictured above: Robbie Gien
‘I chose to raise funds for Swallow’s Nest because I love the work that they do to assist babies in getting through their hard start to life which was not their fault, usually due to negligent or unfortunate circumstances that their biological parents have been dealt in life.’ says Robbie
Swallow’s Nest: A Safe Haven for Vulnerable Children
Swallow’s Nest based in Queenswood, Pretoria, is not just a home; it’s a sanctuary for abandoned, abused, neglected, and special-needs children. Founded and lovingly maintained by 55-year-old Jeanette Birrell from Machadodorp, Mphumalanga since 2001, Swallow’s Nest provides temporary care until these children can be matched with adoptive families, reunited with their biological families, or placed into foster care. Over the past 21 years, Jeanette has cared for 208 babies, offering them a safe and nurturing environment during their most vulnerable moments. As a founding member of the Tshwane Place of Safety Association, which was founded in September 2003, Jeanette’s vision of giving each crisis child love and care in a private home has created a profound impact on countless lives.
Pictured above: Swallow’s Nest founder, Jeanette Birrell with a baby from the sanctuary
‘The roughest roads often lead to the most breathtaking views. Don’t be discouraged by a tough start; it’s just the beginning of your story.” This is for the babies in the care of Swallow’s Nest.’ explains Robbie
Preparation: The 2024 Comrades Marathon
Robbie’s journey to the Backyard Ultra began with another formidable race—the 2024 Comrades Marathon. Scheduled for June 9, the 85.9km up-run served as a preparation ground for Robbie, helping him build the endurance and mental fortitude required for the Backyard Ultra.
The Challenge: Backyard Ultra
On July 20, 2024, at Van Gaalens in Hartbeespoort in the North West Province, Robbie will take on one of the most gruelling challenges in the ultra-running world—the Backyard Ultra. This unique race format requires competitors to run a 6.7km lap every hour. Each lap must be completed within the hour, and whatever time remains is used for recovery before starting the next lap. The race continues until only one runner remains who can complete a lap.
Pictured above: Robbie proudly hold up his IronMan medal
‘Ultra running sends your mind into deep areas of negativity, hardship and despair. It’s easy for your mind to give up but when I think of the difference that I can make by using this marathon to help a child get a kickstart to a great future, it fuels me to drive on. The babies and children at Swallow’s Nest have not asked or done anything wrong to have this sort of hardship fall on their shoulders but they already show more resilience than most adults and I find that incredibly inspiring.’ Robbie tells us.
Running for Swallow’s Nest
With the children of Swallow’s Nest as his motivation, Robbie is determined to surpass his previous record of 11 laps by aiming to complete a minimum of 15 laps, covering over 100km. This incredible feat is not just a physical challenge but a mental one, as Robbie will continuously remind himself to push through with the mantra “Just One More Lap.”
‘The less I must stress about where the funding for the everyday needs come from, the more time I can spend with the babies and toddlers in my care. I can focus on their development and other concerns. Seeing that most of the babies I take of are premature or drug addicted, this takes a lot of time and care!’ says Jeanette
Pictured above: A caretaker at Swallow’s Nest with some of the babies from the sanctuary
Supporting Swallow’s Nest
Robbie’s participation in the Backyard Ultra is more than a personal achievement; it’s a fundraising mission which he has started through a crowdfunding campaign on BackaBuddy where he has already managed to raise over R22 000 with the help of 24 amazing donors. All funds raised through his race will be directly donated to Swallow’s Nest, ensuring that Jeanette can continue her invaluable work of providing a loving and secure environment for children in need.
‘The funds will provide the babies and toddlers in Jeanette’s home with milk formula, disposable nappies, toiletries, medication, food, nursery school fees and other general needs for the crisis children. Every donation counts. It may be such a cliché phrase, however the truth is that none of the babies had a choice to be in this situation and I believe it is our responsibility to assist where we can to give all the babies no matter their background, the best foot forward in life.’ explains Robbie
