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
The last month has been a whirlwind of activity and hard training for 22-year-old sport climber, Lauren Mukheibir from Johannesburg. Returning to South Africa from Perth at the beginning of the month, Lauren made the decision to train rigorously as she prepares for the Paris 2024 Olympic Games in July.
Pictured above: Lauren Mukheibir training for the Paris Olympics 2024
Lauren will compete in both the Boulder and Lead categories at the Olympics. The Lead category involves a 16-meter-high wall with a route worth 100 points, while the Boulder category includes four boulders, each worth 25 points. The combined scores from both rounds will create a score out of 200 to determine the final placement.
“I train about 20 hours a week – 10 hours of climbing and 10 hours of strength training; it’s what my body can handle. Climbing at such a high level requires so much confidence and bravery,” Lauren explains.
Lauren, who will be one of four climbers representing South Africa in Paris, started an intense lead training program upon her return home. This program is designed to build her endurance as quickly as possible in preparation for both Paris and the Innsbruck World Cup, taking place from June 26-30. “I am doing Innsbruck to help me deal with competition nerves, gain some more international experience, and put to use what I have learned over the last couple of months. As such, doing well in Innsbruck is not my priority. It will be a competition to test where I stand, mentally and physically,” she says.
Pictured above: Lauren in her element of rock climbing
After Innsbruck, Lauren plans to compete in a local competition in Cape Town, which will be an excellent practice and preparation for Paris. She will continue her training until July 23, when the team leaves for Paris.
One of the biggest challenges Lauren faces is managing expenses before heading to Paris. Despite her pride and gratitude for being selected, every training session, physio appointment, doctor’s visit, equipment replacement, and travel expense needs to be covered personally. “I have to pay for myself. I am paying for the Innsbruck World Cup with no help from any government or national federation, and because of all my travels, the bills can become quite overwhelming. But I just have to say a HUGE thanks to my parents for supporting me emotionally, physically, and financially through this where needed,” she shares.
Pictured above: Lauren Mukheibir
Modestly, Lauren welcomes any donation, however small, to help her prepare for Paris. “For those who have donated so far, a huge thank you. Your generosity has helped pay for many weeks of training in Perth and physio appointments up to now. Thank you to those who have donated!”
The athletes will soon receive their South African Olympic kit, marking another significant milestone on their journey to the Olympics.
If you would like to support Lauren, she has a BackaBuddy account to help raise money for her pre-Olympic training. You can contribute by visiting her crowdfunding campaign on BackaBuddy where she has raised over R21 000 of her R200 000 goal with the help of 16 amazing donors.
