On the 29th of May 2020, Lisa (41) and Russell Swanepoel (38) from Berea, Durban, who for years longed to be parents, finally welcomed their twin daughters, Stevie-Mae, and Lily-Jean, into the world.
A few months later, the twins were diagnosed with epilepsy after suffering multiple seizures. Then the unexpected happened: Stevie-Mae passed away in her sleep, leaving her parents heartbroken and with many unanswered questions.
Doctors initially thought that Stevie-Mae had passed away due to SUDEP (Sudden Unexpected Death in Epilepsy), a condition whose root cause is not well understood.
In the depths of grief over the loss of Stevie-Mae, and terrified of what this meant for Lily-Jean, the family began a Genetic sequencing journey, which revealed that the twins were born with Dravet Syndrome, a rare, drug-resistant iteration of epilepsy.
The signs of Dravet Syndrome in Stevie-Mae had gone unnoticed, but her passing has given her sister, who is now 2 years old, a fighting chance. This now becomes Lily-Jean’s story.
Currently, Lily’s medical needs are best described as chronic and evolving. She needs constant monitoring as leaving her alone could prove fatal and close attention is paid to her medication.
“Lily’s days are variable as this syndrome has huge effects on her tiredness and 2 of the 4 drugs she takes have a huge impact on her appetite. So eating and sleeping is not a regular or sure thing for her to be able to easily do (let alone the restricted food choices she has on her diet)”
“Someone always needs to be with Lily, particularly when she is sleeping, for her seizure activity to be monitored. Mom and dad, Granny or a carer are always ready to step in to change her environment or administer oxygen or medication to help her deal with seizures.”
“Lily is overwhelmed by tasks and challenges in certain environments. And when she gets overwhelmed (too excited, too frustrated, too tired, too hungry, too hot, too cold) she starts having myoclonic seizures and myoclonic blinks with absences. Those seizure spells can affect her significantly.” – says Lisa
Through their courageous daughter, Lisa and Russell hope to create awareness about Dravet Syndrome so that it may never go unnoticed again. Lily-Jean has a long road ahead of her as she grapples with this disorder, but she is a fighter.
“Despite all of the above, Lily-Jean wakes up every day determined to try and make the most of it and captures the heart of everybody in her path. She is a light that we refuse to let this syndrome extinguish.” – says Lisa
Crowdfunding on BackaBuddy
To support Lily-Jean as she takes on this uncommon, drug-resistant, and refractory enemy, the family have launched a crowdfunding campaign on BackaBuddy that has since raised over R170 000, with contributions from 130 donors.
Funds raised by the campaign are being used to cover:
Lily-Jean’s medical aid premiums so that her family can afford her medications, one of which has to be specially imported and approved from France
Multiple paediatrician visits (any illness can dramatically increase the risk and magnitude of seizures), and Paediatric neurologist appointments to determine Lily-Jean’s progress.
Weekly Occupational and Speech Therapy appointments to help Lily-Jean manage her early childhood development and assist us all with tools to help overcome the learning and developmental hurdles that are in her path
A specialised daily carer
Specialised foods and paediatric dietician
“The support we have received is overwhelming and humbling. Without it, we would not be able to support Lily in the way she needs to be able to deal with what an average day looks like for her. We are acutely and deeply aware of how lucky we are to have this support, and it’s made us even more aware of how other families may not have the same support, but have the same challenges”
“This is why our page and our purpose is to bring awareness to what it takes to successfully (that is different for everyone) manage complex and rare genetic disorders like Lily’s and the monster that is epilepsy. The more awareness we can raise, hopefully, the more families we can help directly or indirectly, and simply even assure them they are not alone.” – says Lisa
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far risen over R350 Million.
Shaun Phelan (23), an electrical apprentice from Stanger, Kwa-Zulu Natal, learned that his dad, Shaun (Senior), was diagnosed with chronic kidney failure in January 2020.
Just 3 months later, doctors discovered that his kidney function was less than 4%.
Hearing that her son and her husband of over 24 years were facing equally difficult obstacles was extremely difficult for Sharon and her family.
“I watched my diabetic husband, who was always active, go through a bypass, then dialysis, and then he was completely reliant on a wheelchair. Then Shaun got sick, which was a major shock, as he had always been healthy.” – says Sharon.
Sadly, Shaun Senior (55) who was a wonderful and giving person, succumbed to kidney failure on 5 October 2021, as he was ineligible for a kidney transplant due to his health problems.
In the absence of his dad, who he loved dearly, Shaun was determined to defeat his diagnosis and was fully focused on his health. Shaun underwent dialysis 3 times a week for up to 6 hours.
“Mom was my Miracle”
Facing the reality that Shaun’s only hope of a ‘normal and functioning’ life, was to have a kidney transplant as soon as possible, Sharon dutifully volunteered to get tested, hoping to beat the 50/50 odds of becoming a kidney donor for her son.
Undergoing blood type, crossmatch, and HLA testing (tissue typing), Sharon was elated to learn that she was a perfect match for Shaun.
“I am really happy that I am a match for my son as this means that he can get the transplant sooner and not have to wait for a match to be found. I hoped that the transplant would be a success so that he can carry on and live his dream and he would not be held back as he was at that moment” – says Sharon
Saving Shaun’s life
With a donor match secured, Shaun was scheduled to undergo his kidney transplant at Netcare St Augustine’s Hospital on 23 June 2022.
To help cover the donor costs not covered by Shaun’s medical aid, as well as Shaun’s transplant and living expenses before and after the life-saving transplant, Sharon had launched a crowdfunding campaign on BackaBuddy.
A kidney transplant will save Shaun’s life
Since the launch of the campaign, over R69 000 has been raised with kind contributions from 50 donors.
Update
Thank you for your support and for walking the transplant journey with me. I couldn’t have done this without you! The transplant took place on the 14th of June, 2022. The transplant was a success, and the doctors are happy with my progress. My blood levels are coming back to normal slowly.
My mother is also doing well and is recovering well. I am on numerous different medications to help with anti-rejection, blood pressure, etc. And medication is really costly. The bills are also starting to come in now from the hospital.
The transplant has impacted my family’s and my life in a positive way as I have not had the need to do dialysis since the 13th of June 2022 because the transplanted kidney has worked immediately after the operation being done. If anything, this journey has taught me one thing is that the support from your friends and family helps with a speedy recovery and makes everything a bit easier to cope with.
The donations so far have helped me to pay urgent bills that needed to be paid and have made life a bit easier in terms of stress levels.
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far risen over R350 Million.
Liané Roux, a 10-month old baby from Secunda, Mpumalanga has faced a number of serious health issues since the start of her life, as a result of being born with 3 congenital heart defects.
Concerned that their daughter (who was 4 months old at the time) was showing signs of a fever, had difficulty breathing, and was tired all the time, doting parents Ashley (26) and Quintin Roux (36), took her to their local hospital, where she was initially diagnosed with a Grade 5 Cardiac Systolic Murmur.
A week later, after seeing a heart specialist at Steve Biko hospital, the family learned that Liané’s condition was much greater than anticipated, discovering that she was born with 3 congenital heart defects: VSD, DORV and TGA.
Liané’s condition in more detail:
Ventricular septal defect (VSD), a hole in the heart, is a common heart defect that’s present at birth. The hole (defect) occurs in the wall (septum) that separates the heart’s lower chambers (ventricles) and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder.
Double-outlet right ventricle (DORV), occurs when two large blood vessels don’t connect to the heart normally. In infants born with this condition, the main artery that carries blood from the heart to the body (aorta) and the artery that directs blood from the heart to the lungs (pulmonary artery) connect partially or completely to the right lower heart chamber (ventricle). Sometimes these blood vessels are also reversed from their normal positions.
Transposition of the great arteries (TGA), is a serious, rare heart problem in which the two main arteries leaving the heart are reversed (transposed). Source
Mending Liané’s Heart
As a result of her condition, Liané was at high risk of getting respiratory infections and ultimately suffering heart failure, when her parents approached the Maboneng Heart and Lung Institute in Johannesburg, the only hospital willing to perform the life-saving surgery she needed.
Under tremendous stress, realising that almost R1 Million rand was needed to save their daughter’s life, the Roux family launched a crowdfunding campaign on BackaBuddy, hoping to secure the astronomical cost of the surgery, as they don’t have medical aid.
Proud parents Ashley and Quintin holding Liané
“Words cannot describe the level of fear and heartbreak we felt hearing the words ‘heart failure’, knowing that we had a financial mountain to climb and a race against time, to save the life of our little angel.” – says Quintin
With generous support, the campaign raised almost R600 000, with contributions from 436 donors, that allowed the family to cover the first three invoices for Liané procedure.
By the grace of God, Liané successfully had her surgery on Friday, April 22 at the Sunninghill Hospital in Johannesburg.
After recovering from her surgery in the cardiothoracic intensive care unit, Liané underwent a second operation to have a pacemaker fitted, that will be able to control her heartbeat.
To support the family with Liané’s aftercare, monthly costs, and outstanding medical fees, donations are still welcome to the little one’s fundraiser, while she waits to be added to her medical aid.
“While we are not out of the woods in terms finances, we couldn’t be more thankful for the community that lovingly formed around us to help fix Liané’s heart. Without people sharing our story and shouting it loudly, we don’t what we would have done. Our little baby has a beautiful future ahead of her” – says Ashley
Charlene Drotsky (34), a stay-at-home mom from Klerksdorp, North West, was involved in a hit-and-run accident on 2 April 2022, while on holiday with her fiancé, Corné Viljoen (39) in Malmesbury, Cape Town.
After spending a night out with friends, a man with a bakkie offered to give Charlene and her friends a lift home. Charlene, who was the last one to be dropped off that night, could never have imagined what would happen next.
When Charlene arrived at her destination and tried to exit the vehicle, the driver reversed unexpectedly, trapping Charlene’s left leg under the front wheel of the vehicle.
Instead of stopping to help Charlene, who cried out in pain, the panicked driver tried to make his escape, driving over Charlene’s waist with the front and back tyre of his vehicle, before leaving her in severe pain on the road.
Charlene Drotsky before the accident
Hearing the commotion outside, Corné rushed to Charlene’s side and phoned emergency services. The driver had already vanished.
“When I saw what has happened to my fiancé, I thought it was over for her. I saw her getting pulled in under a bakkie, I saw her getting dragged into the road. I can still hear her screaming for help as I tried my best to fight the driver to switch off his bakkie, but I was too weak,”
“I managed to run a few metres away from the vehicle towards her as I thought he drove over her head. I remember I started shouting and screaming at God, asking him to please not let my fiancé die,”
Multiple Injuries
After her ordeal, Charlene was treated for critical injuries at Tygerberg Hospital in Cape Town.
She sustained multiple injuries including a broken scapula, pelvis and several broken ribs. She also suffered internal bleeding that resulted in her contracting septicemia and had bleeding on her lungs that needed to be drained. Due to the damage to Charlene’s pelvis, she also lost the function of her left leg.
“Charlene is a wonderful mother and a kind-hearted person who didn’t deserve to be discarded the way she was. This incident has devastated our family, especially Charlene’s two boys, Cayden (13) and Calden (9), who weren’t convinced that she survived the ordeal. They don’t understand what has happened and cry daily for her to come home” – says Charlene’s sister, Marcelle
Update:
On Friday, 19 August 2022, after almost 5 months in hospital, Charlene sadly succumbed to her injuries after her hit-and-run accident.
After days of struggling with her protein levels and getting Refeeding syndrome, Charlene’s condition turned critical. Her blood pressure skyrocketed, her breathing became short and fast, she struggled to recognise loved ones, and then finally her organs began to fail.
Our hearts go out to Charlene’s husband Corné, their two boys Cayden and Calden, her sister Marcelle, as well as everyone who knew and loved Charlene.
“Charlene faught so hard for so long. She was a real warrior. My heart is shattered. I didn’t just lose my sister, I lost my mom and my best friend too. She’s was everything to me. She took me in when we lost our mom. I don’t know how I’ll cope but I will keep strong for her kids and I promised her I will always love then as they were my own” -says Marcelle
Crowdfunding on BackaBuddy
In April 2022, Marcelle, Charlene’s sister launched a crowdfunding campaign on BackaBuddy, that raised over R50 000 through kind contributions from over 42 donors, which became a lifeboat for the family, who struggled to cover Charlene’s extensive medical costs as she didn’t have medical aid.
“The most difficult thing is feeling hopeless and helpless when someone you love is struggling or in pain. We couldn’t be more thankful for the love and support we were shown after Charlene’s horrific ordeal” – says Marcelle
If anyone would like to support Charlene’s family as they come to terms with their insurmountable loss, any additional funds raised, will be used to help cover the cost of Charlene’s funeral and support her family with anything they may need during this painful time.
South Africa’s leading crowdfunding platform, BackaBuddy has supported more than 10 000+ individuals and charities in setting up fundraising campaigns for medical fees, tuition and various causes in South Africa. The platform has thus far raised over R323 Million.
“When I am with the choir, I feel like somebody who is worth something.”
Rachel’s face lit up as she uttered these words. At 14 years old she is one of 40 young members of the Junior Rosa Choir, established by the Cape Cultural Collective in 2016.
The Cape Cultural Collective focuses on communities in the City of Cape Town. The CCC unites communities and promotes personal and community development through the Arts.
The children who are between the ages of 10 and 14 reside in Manenberg, Langa, Kalksteenfontein, Gugulethu, Hangberg and Imizamo Yethu. Many of their families face a daily struggle for survival. They battle to make a living and put food on the table. Some experience the trauma of gang violence.
For a few hours every week, they can relax and experience the joy of singing together without restraint. They gather for practice under the guidance of a qualified music teacher, singing in English, Afrikaans and isiXhosa. The excitement and the energy are palpable as the young ones express themselves in their regular sanctuary.
Their confidence and self-esteem grow visibly. Singing together breaks down cultural, language and spatial divisions. Music improves their learning abilities and promotes harmony among the singers. They also participate in performances, an annual concert and a summer camp.
The partners in the initiative are the CCC and the Denis Goldberg House of Hope, an arts development centre in Hout Bay inspired by the late Rivonia trialist who was sentenced to life imprisonment in 1964 along with Nelson Mandela and others.
About 16 children from the Hangberg and Imizamo Yethu communities are part of the choir.
Transporting Talent
One of our biggest needs to ensure the sustainability of the Junior Rosa Choir is transport, which accounts for about half of the choir’s expenses annually.
To help cover the fuel costs for the remainder of the year, estimated to cost R30 000, a crowdfunding campaign has been launched on BackaBuddy, so that the children can continue their magical experience of singing, developing and moving around the City.
“Transportation is expensive. Some of the factors that drive up the costs of transport are high petrol prices and long distances which result from the legacy of spatial arrangements during the time of segregation.” – says Kay Jaffer, Founder of the Junior Rosa Choir
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 R320 Million.
