Lorelai Mathilda Lubbe’s Fight for Life Against a Rare Heart Defect

Lorelai Mathilda Lubbe’s Fight for Life Against a Rare Heart Defect

On May 9th, 2024, the lives of the Lubbe family from Gonubie, East London, changed forever with the arrival of their beautiful baby girl Lorelai Mathilda (meaning warrior). They eagerly anticipated meeting their healthy baby girl, but little did they know that her first breath would soon be supported by the hum of medical machines. As new parents, they couldn’t yet grasp the challenging road that lay ahead with their warrior daughter.


Pictured above: 2-month-old Lorelai Mathilda Lubbe (Warrior)

Lorelai has Pulmonary Atresia, a rare heart defect that affects 1 in 10,000 babies. This condition occurs when the pulmonary valve doesn’t develop, preventing blood from flowing from the heart to the lungs to get oxygen. Additionally, Lorelai has a Ventricular Septal Defect (VSD), meaning there’s a hole in the wall between her heart’s lower chambers. The prognosis for babies with Pulmonary Atresia is daunting, with an 80% mortality rate by their first birthday. The diagnosis was never picked up in utero, so when Lorelai was born via emergency C-section, it was only then that the doctors and her parents, mum Dominique Lubbe (21) and dad Morne Lubbe (27) found out.

“We were absolutely shattered, it was so unexpected. It felt like everything was going wrong. The day before we were so excited to meet our first baby after a long pregnancy. Then I had an emergency c-section from a failed induction and then the doctors came in and told us they had bad news. We went cold all over. I couldn’t breathe. The days that followed were so difficult, not going home with your baby, questioning if it is your fault and the doctors saying there is nothing I could have done as a mom to prevent this, that it is just a bad draw of cards. It just gets harder and harder visiting and seeing our baby in hospital, her not knowing the beautiful room we’ve made for her at home. Her bull terrier sister is waiting at home. Our family wanted to meet her. We’d do anything to have her home with us.” says an emotional Dominique


Pictured above: Lorelai with her mum, Dominique Lubbe

Lorelai’s congenital heart defect is terminal if not addressed, as her underdeveloped pulmonary arteries prevent normal breathing and result in very low oxygen levels in her blood. Lorelai and Dominique were airlifted from East London to Sunninghill Hospital in Rivonia Sandton, Johannesburg, where the Maboneng Heart and Lung Institute specialises in complex open-heart surgeries for babies. The institute also has the advanced CT Echo scan resources necessary for detailed diagnosis.

Lorelai requires a complex open-heart surgery for a full heart repair, and she will need multiple surgeries throughout her life to replace the conduits (artificial arteries) as she grows. Her family urgently travelled to Johannesburg, carrying many prayers in their hearts, for the expertise at Sunninghill Hospital. Despite their efforts to prepare for a healthy baby, Lorelai’s parents now face overwhelming medical expenses as Sunninghill Hospital is out of their medical aid network, making the additional costs and co-payments beyond their means.

“Lorelai is currently fighting an infection from her central line (IV). They have to give her medication though that line to keep her patent ductus open artificially. But the medication has severe side effects including bone pain, and the other lasix medication causes hearing loss so she faces many challenges everyday. But the sooner she can get her operation the sooner they can get her off the lasix and prostin medication. She is just fighting an infection again.” explains Dominique

Lorelai being the warrior that she is has already fought so hard to be here every day. She deserves the chance to live a full and healthy life. Currently, she rests in her little glass box at Sunninghill hospital, awaiting her surgery. 


Pictured above: Little Lorelai at the Sunninghill Hospital

“Lorelai is defying all odds everyday. They said she would never pick up weight and yet she has, on a daily basis she fights to be with us. Her middle name Mathilda means mighty in battle. She is in a mighty battle with her imperfection and we can’t fight the fight for her but we are doing everything we can to fight with her everyday by being at the hospital everyday, sitting with her from morning until night. Reading to her, talking to her, praying for her. She is a miracle child.” Dominique tells us

To alleviate the financial burden which bears down on them the family has started a BackaBuddy crowdfunding campaign where they have already raised over R24 000 of their R1 000 000 goal with the help of 39 amazing donors. The family humbly asks and prays for any donations that can contribute to Lorelai’s life-saving surgery.

“We don’t know what we would do without the help of BackaBuddy. They provided us with a platform for Lorelai’s funding and we are really thankful. We have medical aid but we face extreme out of pocket fees because this hospital is not a network hospital. With this extra help we can afford to pay the doctors, staff, and for tests which are saving Lorelai’s life. Not just that, it also helps us to be with her everyday. Every cent helps in the huge ocean of money required to keep her stable so that she can come home after her operation.” says Morne.


Pictured above: Lorelai with her dad, Morne Lubbe

“We are so grateful that our donors have added a new stitch to Lorelai’s heart. Every cent gets her the help she needs. As parents and as a family it breaks our heart that we can’t provide her with the finances to afford her operation, so we as parents and as a family are eternally grateful for her heart warrior donors that are helping us with finances that we as parents can’t do on our own. We thank our donors that are angels in disguise and heart warriors fighting with Lorelai . We see every donation and any bit of assistance is a gift from our mighty God above.” Morne tells us


For updates about Lorelai’s journey, please visit the family’s Instagram page @the_lubbes


Support Lorelai’s campaign here: https://www.backabuddy.co.za/campaign/lorelais-warrior-heart


A Mother’s Hope: Carol’s Journey from Kidney Failure to a Life-Saving Gift from Her Son

A Mother’s Hope: Carol’s Journey from Kidney Failure to a Life-Saving Gift from Her Son

In a heartwarming turn of events, Carol de Swardt, a 62-year-old mother of five from George, has found renewed hope in her battle against kidney failure. After years of suffering, her eldest son, Cyril, has stepped forward with an extraordinary act of love and sacrifice.

Carol’s struggle began in 2020 when she first started showing symptoms of kidney failure. Her condition rapidly deteriorated, leading to severe swelling, constant fatigue, and relentless dehydration. By 2022, Carol’s health had declined to the point where she required dialysis—a gruelling four-hour procedure three times a week that left her feeling terrible afterwards. “I am constantly nauseous and vomit all the time. My back aches because of my diseased kidneys and I am always tired,” Carol told the George Herald. The illness runs in her family; her mother succumbed to kidney failure, and one of her grandsons has also recently started dialysis.

In May of this year, Carol’s doctor referred her to Dr. Trevor Gerntholtz, a nephrologist from Cape Town, who confirmed that she was a good candidate for a kidney transplant. The news brought a glimmer of hope to Carol’s life. However, the biggest surprise came from her eldest son, Cyril, who had been quietly preparing for this moment for over a year.


Pictured above: Carol and her son Cyril who will also be her donor

“I had such a wonderful surprise when my eldest son, Cyril (46), came to me earlier this year to say that he has been following a healthy lifestyle for a year now because he wanted to be healthy enough to donate a kidney to me. He had stopped smoking and drinking, but kept quiet about it for the entire year,” Carol recalled.

In addition to Cyril, Carol’s youngest son, Ferrier, also underwent tests to see if he could be a potential donor. Miraculously, he too was found to be a match. “This means that if the operation is not successful, I have yet another chance, so I am immensely grateful,” Carol said.

Cyril’s motivation for this selfless act stems from his deep love and appreciation for his mother. “It is my turn to give back. She sacrificed her own needs for our family’s well-being. I am her firstborn and it is the best way to show my love for her. I want to be there for her, to hold her hand, and to help her through this challenging time. I just want them to ‘plug and play’ now—take out my kidney and get it into her. We are ready to go. The longer we wait, the longer she has to suffer,” he expressed.


Pictured above: Carol and her daughter Samantha Shrives

Dr. Gerntholtz explained the high probability of children being a match for their parents due to shared genetic material. However, the process is not without risks. The receiver needs to be on strong anti-rejection medication post-operation, which can cause heart disease. For the donor, any surgery carries risks, but thorough evaluations ensure it is safe to proceed.

Complete recovery for both donor and receiver typically takes about three months. In the meantime, Cyril has started a BackaBuddy crowdfunding campaign, “A selfless act of love: helping a son save his mother’s life” to raise funds for the necessary accommodations and travel expenses. Living in Pietermaritzburg, Cyril and his wife must fly to Cape Town for the operation at Groote Schuur Hospital, a cost they cannot afford on their own.

Carol’s story is a testament to the enduring power of family and love. Despite her immense pain and suffering, the support of her sons and the generosity of others have given her a renewed sense of hope. As she waits for the transplant date, Carol remains grateful for the opportunity to regain her health and spend more precious moments with her family.


Support Cyril’s campaign here: https://www.backabuddy.co.za/campaign/a-selfless-act-of-love-helping-a-son-save-his-mothers-life



Community rallies to help nine-year-old Miane Swart overcome seizures

Community rallies to help nine-year-old Miane Swart overcome seizures

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.”

Icon’s Journey Marathon 2024: Chief Sangoni Confirms New Partnerships for Fourth Edition Featuring 400 km Iconic Challenge

Icon’s Journey Marathon 2024: Chief Sangoni Confirms New Partnerships for Fourth Edition Featuring 400 km Iconic Challenge

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.


For more information on entry and pricing, visit www.theiconsjourneymarathon.com http://www.theiconsjourneymarathon.com 


Support the campaign here: https://www.backabuddy.co.za/campaign/400km-iconic-challenge-2024 



Stepping Up to a Brighter Future: Addressing Clubfoot in Southern Africa

Stepping Up to a Brighter Future: Addressing Clubfoot in Southern Africa

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.


Watch the recording of the webinar here: https://we.tl/t-WcnOp83X5a


The RunFree2030 Initiative

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.


For more information and to become a “Stepping Up” champion, visit their BackaBuddy campaign here: https://www.backabuddy.co.za/campaign/stepping-up-to-change-a-childs-life


SOURCE: SA Lifestyle Magazine

Support the Marine Mongrels: South Africa’s Surfboat Rowing Champions Head to World Championships in Australia

Support the Marine Mongrels: South Africa’s Surfboat Rowing Champions Head to World Championships in Australia

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.


Support their campaign here: https://www.backabuddy.co.za/campaign/marine-surf-lifesaving-club-surf-lifesaving-club-5845850575217258496