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
On Friday, Victor du Plessis, 35, sadly passed away due to multiple organ failures after he suffered from various incurable diseases.
Marlene Mans (52) a single mom from Rustenburg, Johannesburg, has dedicated her entire life to caring for her son, Victor du Plessis (35), who was born with special needs.
For as long as Marlene can remember life has been a struggle for her son, who has lived between home and the hospital since he was born.
Always fighting an infection, Victor’s symptoms needed to be monitored closely to avoid devastating consequences.
“When the nurses handed Victor to me when he was just minutes old, I stared into his eyes, and unknowingly gave him the most appropriate name. A ‘victor’ is someone who has overcome an adversary. Considering the battles he’s fought and conquered, it’s a perfect fit” – says Marlene
In his lifetime, Victor has suffered 3 strokes, battled diabetes, epilepsy, bleeding on the brain, and a multitude of rare, incurable diseases. Contracting Covid-19 last year, Marlene says they almost had to say their goodbyes.
“Many times doctors gave up on Victor and told us there is little hope, but every single time our Vicky has pulled through. He’s a champion” – says Marlene
A breakdown of Victor’s rare conditions
Trisomy 21: A genetic chromosome 21 disorder that causes developmental and intellectual delays.
Basal ganglia calcification of the brain: A very rare condition that happens when calcium builds up in your brain, usually in the basal ganglia, the part of your brain that helps control movement.
Schizophrenia: A serious mental disorder in which people interpret reality abnormally, which leads to hallucinations, delusions, and extremely disordered thinking and behaviour.
Congenital Rubella Syndrome (CRS): A condition that affects a person’s heart and mental ability.
Coeliac disease: A condition that causes hypersensitivity to gluten, which leads to difficulty in digesting food.
Malabsorbtion syndrome: A condition that prevents absorption of nutrients through the small intestine.
Polyglandular autoimmune syndrome: A rare and complex recessively inherited disorder of immune-cell dysfunction, which causes endocrine gland and gastrointestinal dysfunctions.
“Of all Victor’s conditions and ailments, this was perhaps one of the hardest to come to terms with. I can’t picture a day when Victor might not recognize me, his sister Vianca, and his nurses who have become an extended part of our family. We all love our little teddy bear” – says Marlene
Victory for Victor
As Victor was wheelchair-bound, struggled to eat and drink as a result of his brain function and was reliant on a permanent catheter, he needed around the clock care and a top tier medical aid.
Marlene said that without her daughter, Vianca (32), who has lovingly sacrificed her independence, and much of her salary every month to care for her big brother, she doesn’t know how they would have made it this far.
“Vianca is the most selfless person I have ever met. She has been with me every step of the way, and in many ways is Victor’s second mom. She takes him everywhere she goes, shaves him, bathes him and checks up on him. This she does out of pure love, not an obligation” – says Marlene
Victor with his little sister, Vianca
Supporting Victor
As Victor’s medical needs were extensive, his medical aid was often exhausted at critical times, and Marlene and Vianca were often unprepared for burdening co-payments.
Reaching out to the public for support, Marlene, who had taken a second job as a sales rep to care for her son, launched a crowdfunding campaign on BackaBuddy to help cover Victor’s medical needs which costed about R10 500 a month.
“With Victor’s chronic medication, specialist visits, daycare and dietary needs, his medical expenses are a mountain we try to conquer every month. It’s been difficult physically, emotionally, and financially” says Marlene
While no stranger to hard work and late nights, Marlene says she didn’t picture working this hard at her age to care for her son, but says “it’s what any mom would do”.
“No matter how stressed our situation becomes, it’s all worth it when Victor comes back from the clinic with a paper flower he’s made and a beaming smile on his face. I always say God has put us on this path for a reason, to teach us patience and humility”
Victor has sadly passed away
It is with sadness in our heart that we say goodbye to our little sunshine boy. Vicky past away on the 8th of July at 16h00 as a result of multiple organ failure.We would like to thank everyone that ever donated towards this fundraising campaign and followed our journey.
We would like to thank Zane and maroela media who went out of their way in supporting is and made our journey a little bit easier. Vicky was a great warrior but in the end he died with peace and love on his little face.
May his life always be an example to others, of never giving up. Rest in peace our little warrior.You will be loved always.
If you would like to attend Victor’s funeral Tuesday, 19th July 2022, at 10h45, please meet at Moepelstraat Rustenburg Oak Proteapark.
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 R314 Million.
Aaron Lipschitz (7) from Sea Point, Cape Town, is the first child in South Africa to be diagnosed with Interleukin-12 Receptor Defect, a rare, genetic condition that affects the immune system.
In simple terms, the cells in Aaron’s immune system do not communicate effectively and as a result he is unable to fight infections.
Of the few known cases worldwide, Aaron is the only child who is unable to tolerate any food without becoming very ill. Before his bone marrow transplant in August 2018, the only nutrition he has been able to cope with was a hypoallergenic formula called Neocate LCP. He is still primarily fed via a MIC-KEY feeding port in his stomach.
Undergoing a Bone marrow transplant
As there is currently no cure for Aaron’s condition, the only way for him to overcome his recurrent infections and survive this condition, was to have a bone marrow transplant.
To help cover the costs of finding an international bone marrow donor, as well as assist his family with his ongoing medical expenses, a campaign was created on crowdfunding platform, BackaBuddy.
Finally in August 2018, Aaron’s family got the call they had been waiting for.
With the support of The South African Bone Marrow Registry, a 100% bone marrow match was found for Aaron overseas. At only 3 years old, Aaron underwent chemotherapy to destroy his current defective immune system before it was replaced with the donor’s bone marrow.
The risky procedure was met with complications when Aaron developed a very rare reaction to the new bone marrow, called a Cytokine Storm, which landed him in Red Cross ICU for a month. The fact that he was able to survive the transplant is a miracle, says Aaron’s mom, Taryn.
“Aaron is a fighter in the true sense of the word. His doctors were trying to prepare us for the worst and I told them to wait and see…Aaron survived against all odds.He has the most incredible zest for life and thirst for knowledge.” – says Taryn.
Since the bone marrow transplant, Aaron seems to be getting fewer infections but unfortunately his immune system has not reconstituted as well or as quickly as doctors would have liked.
To boost his immune system, he needs to have weekly immunoglobulin treatment. Aaron has slowly started to be able to tolerate small amounts of oral food since his bone marrow transplant.
“Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead. Whenever we feel that we are getting close to the summit of this mountain,the mountain seems to become higher. All we can do is keep our heads down and keep putting one foot in front of the other.” – says Taryn.
Currently, Aaron’s condition is more stable, but he still has extensive medical needs:
Aaron currently survives on formula administered 3-4 times a day via a MIC-KEY feeding tube in his stomach.
He still requires weekly immunoglobulin infusions where a tiny needle is inserted under the skin in his stomach to administer the infusion.
Aaron is in occupational therapy, physiotherapy and play therapy to help support him and allow him to lead the most normal life possible.
Aaron’s little sister, Eden
Like most parents, Taryn and Steven had always dreamt of having a second child, giving Aaron an opportunity to be a big brother.
After extensive genetic testing concluded that Aaron’s condition was most likely a random phenomenon that didn’t have a genetic cause, the Lipschitz family were very confident, albeit not 100% certain, that they would have a healthy baby.
“Of course we naturally had concerns that a second child would have a similar condition to Aaron although his exact diagnosis is still unknown. We know that he has a Primary Immunodeficiency but the subtype or variant seems not to have been documented yet worldwide.” – says Taryn
Welcoming their beautiful daughter, Eden into the world on the 27th September 2021 the family never in their ‘darkest nightmares’ imagined that she would be even sicker than Aaron ever was as a baby.
“Within a couple of weeks it became clear that Eden had significant difficulty tolerating feeds and displayed extreme pain and severe vomiting after feeding. Aaron had always tolerated a very hypoallergenic formula called Neocate LCP since birth but Eden is not even able to tolerate that. As a last resort we have had to resort to TPN (total parenteral nutrition) which is intravenous feeding to keep her alive.” – says Taryn
Currently, it is unclear if Eden has the same condition as Aaron, as extensive exome sequencing has not determined the cause of Eden’s difficulties. Doctors believe that Aaron and Eden may have a new genetic variant that has not yet been recorded worldwide.
A family facing financial pressure
The financial pressure the Lipschitz family is experiencing, now managing two children with extreme medical needs, has been tremendously difficult for the family, which is on the top medical aid plan, which is expensive in itself.
Taryn, who works as a play therapist, has also not been able to return to work full-time, as Eden’s current hospital admission has been 10 weeks long.
Once-off and recurring donations to the Lipschitz family fund on BackaBuddy, have carried the family through emotionally, physically and financially, says Taryn.
“We are so blessed and grateful to be part of this community and know that help and support is available. We look at how far Aaron has come and we are filled will hope that with the community behind us Eden can also overcome the enormous challenges that lie ahead of her.”
The Lipschitz family would like to encourage all South Africans, to register as bone marrow donors to give children like Aaron and a second chance at life.
To date, the SABMR has helped save the lives of nearly 550 patients with life-threatening blood disorders by matching them with healthy, unrelated bone marrow donors from South Africa and the rest of the world.
According to SABMR, Sustainability Portfolio Manager, Kamiel Singh, there are currently only 74 000 donors registered on the site to cater to over 57 million South Africans.
“We are urging people to go onto the SABMR website to register as a bone marrow/stem cell donor. The process is as simple as making a phone call, filling out a form and having a mouth swab taken. You could save Aaron or another person waiting for their miracle.” – says Taryn
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 44000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R500 Million.
Dale Benson (39), an educator from Cape Town, South Africa, who had been teaching English in Vietnam, arrived safely home on the 15th of July after receiving the devastating news that he is dying of stage 4 cancer.
Time was of the essence
After experiencing severe stomach pains for a couple weeks, Dale was rushed to hospital on Friday, 2 July 2021 for an emergency operation, when doctors found cancer in the whole of his abdominal area.
Without medical aid, Dale, who was in ‘bad shape and in a lot of pain’, was being treated at the University hospital in Hanoi. The doctors had estimated that he had about one month to live without chemotherapy
The race to get Dale home
As Dale’s mother, Inge Bosman, was unable to fly to Vietnam, due to their borders being closed because of the pandemic, the family made arrangements to have Dale airlifted out of the country with a medical plane, which estimated to cost an astronomical amount.
Dale in high spirits as he arrivals home in South Africa.
“It’s difficult to express the exact emotions I am feeling in words, to be able to thank each person for their generosity towards me. Even though we are experiencing a global pandemic and every penny counts these days, all of you without hesitation came forward to donate to my cause. I will never be able to thank you enough. I truly hope one day in whatever life it may be that I can be there for you. I am going to fight this disease with every piece of strength I have. Warrior mode activated. Love you all to the moon and back.” _ says Dale.
To assist the family with funds to cover the cost of the trip, and get Dale the best possible medical care on South African soil, a friend of the family, Karen Baschiera, launched a crowdfunding campaign on BackaBuddy to appeal to the public for support.
Since the launch of the campaign on 6 July 2021, over R209 000 has been raised through generous contributions from 459 donors.
“I am overwhelmed by the financial and emotional support from each and every person that commented..Has put me in a such a loved space” – says Inge.
Support Dale’s cause by donating to his BackaBuddy campaign here:
Manning up to cancer: A Message from Dale (17 FEB 2022)
“I am currently busy with my 8th round of chemo. At the end of this month, I will be given a 3-month break from it and continue again in May. The first scan I had a few months ago showed that the chemo was able to dry up the ascites fluid which was causing so many problems for me. I was hardly able to eat and my health was declining rapidly. I was admitted to hospice for them to monitor me. After spending 3 days there I managed to somehow get well enough to be discharged. It was then my chemo journey started and after a month or 2, I was feeling so much better.
The chemo of course has its own side effects but staying positive and managing the effects makes it tolerable. I have changed my diet and unfortunately had to cut out things (sugar) which is not easy but definitely helping with my success of beating this illness. So it’s been around 8 months and today. I am feeling strong”, says Dale.
Thank you to the 459 incredible donors who supported Inge in bringing her son, Dale, Home From Vietnam
I wake up each day grateful to start a new day with a smile on my face and a warrior spirit in my heart. Every day I also think of all the wonderful humans that helped me get to where I am today. I am going to continue fighting whilst living the best life I can live. My next scan will be in a few months and I will then be able to see how the treatment is going. Will update you all again then. ❤️ – says Dale
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 R260 Million.
3-year-old, Kyleigh ‘Milana’ Kista, from Benoni South Africa was diagnosed with a Complex Congenital Heart Defect at birth, and needs urgent, life-saving treatment in the US within the next 3 months.
Kyleigh’s condition, known as Tetralogy of Fallot with Pulmonary Atresia, VSD & Mapca was first described by Cardio-Thoracic surgeons as a ‘monster in her chest.’
“Kyleigh does not have the valve that connects the heart to the lungs, the arteries that are meant to be attached to this value is free-floating and underdeveloped and not connected to her heart. She has a large hole in heart and survives on 2 collateral arteries of which one has already started to narrow severely. This all puts a lot of strain on her little body.“ says Serina Kista, Kyleigh’s mom.
In her short life, Kyleigh has endured 3 open-heart surgeries and countless non-invasive procedures that have done little to remedy her warrior heart.
A second chance for Kyleigh
In November 2021, the Kista family’s ‘world came crashing down’ when they were faced with limited options to save their daughter’s life in South Africa.
As a last resort, doctors suggested that the family wait until Kyleigh’s organs begin failing, at which point a heart & lung transplant would be considered.
As there are a limited number of donors available, and the fact that this procedure has never been performed on a paediatric patient before, the family feared the substantial risk their daughter would be subjected to.
“Kyleigh would need to be condemned to significant suffering and damage to her heart and lungs before being admitted into ICU in a critical condition to be placed on a donor list and fight for her life with no guarantee of finding a donor in time “, says Kyleigh’s mother Serina.
In absolute desperation to save Kyleigh’s life, the family investigated alternative treatments, finally reaching out to the Boston Children’s Hospital in the USA for a second opinion.
Answering their prayers, doctors revised Kyleigh’s case and restored all hope that their beautiful little girl could be saved and have a better quality of life.
“They proposed an innovative technique to repair her heart, which they currently perform with great success at the hospital. They will use Kyleigh current anatomy and reconstructing her blood vessels in order to flow effectively through her lungs while also incorporating her collateral arteries as part of this procedure.” says Serina.
Time is of the essence to save Kyleigh
Understanding the urgency of the procedure, the hospital kindly offered a reduced rate for the operation, which is still an astronomical amount for the family without power or influence.
To fund the operation in the USA, estimated at R5 000 000 ($295,761), the family has launched a crowdfunding campaign on BackaBuddy, to appeal to the public to support their final and only hope to save their little one.
“Boston Children’s Hospital has given us new hope and we are holding on to this option with all that is in us. Without it, our little girl will never get the chance to grow up and have a normal, happy, healthy life.” – says Serina.
An outpouring of compassion
With overwhelming support from over donors both locally and internationally, over R4.7 million ($312 590) was raised on BackaBuddy, which has since been paid over to the medical facility in Boston!
The family’s visas have been approved and Kyleigh’s life-saving open heart surgery is set to take place on 24 March2022.
“We received overwhelming support from family, friends, colleagues and the community. Thank you for the heartfelt contributions, prayers and faith that Kyleigh will not only obtain the money for the procedure but will succeed through the procedure, bringing us to tears. We felt hopeless and alone but today we have so many people coming to Kyleigh’s rescue to help us give a future, an opportunity at life” says Kyleigh’s mother, Serina.
A mended heart
Kyleigh’s first operation, a cardiac cartherization, took place on 22 March 2022 at Boston Children’s Hospital.
During the 4 hour procedure, which ‘went even better than expected’ , Kyleigh’s arteries were ballooned and a stent was placed and dual supply was fixed.
With Kyleigh making a quick recovery, the final procedure to repair her heart and lung connection took place on 24 March 2022.
After 8 hours on the operating table, doctors declared the surgery a resounding success and Kyleigh was placed on a ventilator in ICU.
Fortunately, within less than 2 days of her surgery, Kyleigh was moved from the intensive care unit to the stepdown unit.
“Kyleigh’s recovery is astounding, it’s truly the grace of God!” – says Serina
‘We can breathe again’
Although Kyleigh’s surgery has been paid for, the fight is not yet over, Serina told IOL:
“Kyleigh will need medication after surgery. We are not sure what medication will be needed, they will advise us after the surgery is done. She will need annual check-ups and most likely a valve replacement when she is older.”
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 R290 Million.
In January 2022, Matthew Hahm (11), Thorne Davids (10) and Alex Jacobs (9), from Parkwood, Cape Town, heard a loud dog’s cry after a free-roaming dog chased Bruno, Thorne’s puppy into the road where he was knocked by a car.
Without hesitation, the three children put Bruno in a car seat and walked 2km, each carrying a side of the baby chair, to Cape of Good Hope SPCA, to help the pup who was traumatised and in a lot of pain.
“Thank you to the wonderful SPCA who are doing their magic to ensure that Bruno is brought back to health and to the families of these children for raising what can only be described as angels.” – says Anthea
Pictured above: Bruno in his baby car seat
‘These children are our future’
“These children showed us something so incredible – an act of kindness from which we could all learn something special.” – said Anthea Scholtz, a massive fan of SPCA’s work, who has since launched a crowdfunding campaign on BackaBuddy to reward the ‘Super Citizens.’
Since the launch of the campaign, over R16 000has been raised towards the fundraising target of R20 000 which will be used to purchase much-needed school uniforms and stationery for the boys (Matthew and Thorne) and girl (Alex), as well as treat them to a day of their dreams.
“We want to ensure that all three children and their families have what they need to keep nurturing what are already very special souls.”
“The funds raised will go toward showing these Super Citizens exactly how wonderful their deed was and to shine a truly positive light on Animal Rescue. It’s a small act of kindness like this that adds up to something far greater than we could imagine. Let’s reward those that do so much good. These children are our future.” – says Anthea
Anthea has asked that funds raised be administered by BackaBuddy NPC, to ensure that funds are used for their intended purpose, and to provide full transparency with donors. Donors will be updated on the children’s progress, says Anthea.
A few messages from the 39 donors who have supported the children thus far.
“Thanks for inspiring us to take better care of our animal friends!” – Joseph O
“Well done boys, please stay the kind angels that you are protecting animals, Thank you to SPCA” – Danni
“So happy that these wonderful children have shown such kindness. I hope that their parents are beyond proud. ” – Caro Beggin
“So proud of you for taking responsibility and care for your puppy. May you all be blessed x” – Caryn Kennedy
“Such mercy, kindness and compassion displayed by these gentle little souls.” – Raksha
Update: Fun in the Sun
On Saturday 12 Feb 2022 the team at Super Citizens spent the most wonderful time taking the families of Thorne, Matthew, Alex and puppy Bruno out on the day of their dreams.
A sailing experience for eighteen people started the day of fun by spotting dolphins and other beautiful sea life. Add to that Ferris wheel rides and a day filled with great food – it all amalgamated into what was simply a beautiful experience.
The stationery has been delivered to the children and their uniforms are all ready for collection. This has served as a truly wonderful project to thank the three children for an unforgettable deed for their dog, Bruno.
Credits:
Waterfront Charters for the sailing experience
Bluebird Bespoke Travel for the chauffeured luxury vehicles for the families
Marc Shane Berman for the photography on the day
John Sanei, Shinnai Visser
Tarryn Kelly & Sanela Paisley (Super Citizens team) for all the help in networking to raise funds
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 R290 Million.
