Divan Conway is a 11 year old boy who was diagnosed with Lissencephaly (smooth brain), Cerebral Palsy, and Epilepsy (West Syndrome). He currently weighs 40kg, he can not walk or talk at all, and his mother has to carry him everywhere.
Divan suffers from extreme cerebral palsy therefore he cannot walk or sit on his own nor can he speak. As a result of constantly being in bed he developed chronic lung damage. He will be using nappies for the rest of his life and therefore also linen savers.
Due to his special needs, mom had to leave her job to take care of him.
Divan has epilepsy and has 5/6 fits on a daily basis, and is on six types of medication: Epilim, Keppra, Sabril, Rivotril, Epanutin and Ativan. The epilepsy is extremely challenging to control.
He regularly contracts infection in his lungs due to all the mucus and lack of movement, and has been admitted to hospital repeatedly for Acute Upper Respiratory infection. Mom has to clean his throat and nose with a suction machine to remove all the mucus that he doesn’t swallow. Divan has a feeding tube because he can’t eat and drink, and can only consume milk and water. He also struggles with bladder infections because his bladder does not get rid of all the urine. It is mom`s duty to empty his bladder for him at home using catheters.
Please open your heart and support our fundraiser for Divan by purchasing any of his “Little Soldier” bracelets, “Hope for Divan” bracelets or key ring. All proceeds are donated towards his ongoing medical are and expenses – together we CAN make a difference in their lives!
Alternatively, please consider a donation, any and all donations welcome. REF: Divan Conway.
“Tristan Swanepoel was born with Cystic Fibrosis (CF). Completely genetic, incurable, and as the Doctors like to say: “born terminal”. If you have seen the movie “Five Feet Apart” you will have had a glimpse in to the life of a CF’er. When he was first diagnosed the doctor was so shocked about the state of his lungs (they did a CT), he said it is a miracle that Tristan can function without oxygen, as he has holes, not properly functioning lungs.
We cannot afford Tristan’s medications, now more than ever, as I lost my job. We still go to Steve Biko to see Doctors and get his medications. The meds are the really astronomically expensive part of our day to day life.
Tristan was only diagnosed 5 years ago, and for the first 3 years, they could not trace the 2nd gene that combined with the Df508 gene to cause CF. But he had every single symptom. The Dr’s were fascinated as he presented with all symptoms, but they could not conclusively prove it without the second gene being found. After a series of bloods where they went looking specifically for genes, they finally found the second gene. HE was now not just presumed CF positive, it was fact. The missing puzzle piece was found.
We still stare the fact that his lungs are deteriorating day by day in the face. He builds no anti-bodies for any disease, no vaccinations have a chance to build his system up.The missing gene is so unknown that the doctors have to monitor him for any diseases that start to show. His type of CF mutates from the genes that cause it, and his 2nd gene is so rare, they have no frame of reference. They cannot prepare us for what might come.
CF sufferers with other gene mutations end up with: kidney failure, lupus, cancer, liver disease, heart disease, to name a few.
But we stay hopeful, stay on our knees. The doctors initially estimated he would need to have a double lung transplant by the age of 16. He is turning 14 on 26 March 2021, and he is still not on oxygen. He is still breathing on his own. He does complain about his legs hurting, a lot. And this is being looked in to.
He and his twin brother, Heyden, sat together to pick the new colours and charms for the new bracelets.They lean on each other every day. And what I treasure is even though they are “Teenagers” now, they still will hug me and tell me they love me. This is something in my life that I will treasure forever.”
This is a horrible disease and an immense battle to fight and so we continue raising funds to assist with Tristan`s ongoing medical expenses. Together we can make a positive difference and give him a fighting chance. Please support our fundraising initiative by ordering your bracelets today. Every little bit goes a long way!
Alternatively, please consider a donation. Any and all donations welcome. REF: Tristan Swanepoel.
Fundraising for Tristan Swanepoel
Lean on Me Bracelets
The “Lean on Me” Bracelets for Tristan consist of coloured wooden beads with crystal, silver and diamante fillers. Options: 1. Silver with Puzzle charm 2. Black with Four-Leaf clover charm 3. Silver, black & red mix with crown charm
Janu Swart, from Klerksdorp, was born premature at 29 weeks. He had a birth weight of 1.29kg and thrived, but by the time he was 10 months old he could not sit on his own yet and seemed floppy. Janu was only diagnosed at the age of 3 with Cerebral Palsy, due to Periventricular Leukomalacia. In February 2017 he started having seizures, and was diagnosed with epilepsy.
Janu is now 5 years old, he has visual problems and gross motor skills are impaired. He still can’t sit by himself or walk, and remains on epilepsy medication. He is seeing an occupational therapist once a week, and his speech improved remarkably since having neuro-development therapy.
Janu is in a school with a caretaker that goes with him and otherwise his mom takes care of him. He is attending a normal school because his speech improved so much, even though he struggles with writing and fine motor skills. It would be ideal for him to have a computer with a special keyboard to assist him in his learning process.
Janu is using a walker but needs his own walker that can assist him with independent walking. To get to that point, he would have to get foot and ankle orthosis (afo’s), which the medical aid doesn’t fund. He will have to undergo botox for his legs in the near future, and might be a good candidate for selective dorsal rhizotomy (SDR) surgery, which is only done in Cape Town or America.
Stem-cell therapy would also improve his gross motor skills and can make a big difference in his life. Another option is Hyberbaric Oxygen Therapy (HBOT) which can improve spacticity in his legs. In the meantime he started with swimming therapy and is showing improvement.
Janu is such a friendly, happy child and gives everyone compliments. He is surely a CP warrior, constantly proving doctors wrong with his development.
Fundraising for Janu Swart
Puzzle of my Heart Bracelets
Puzzle of my Heart Bracelets for Janu; consisting of light grey & white wooden beads with crystal, silver and diamante fillers.
Logan Clarke was only 14 months old when he was diagnosed with Pierre Robin Syndrome – a syndrome that usually affects the face and formation of bones, mouth and throat. He sometimes struggles to calm down and all that can calm him is certain people and music, he lives for music.
Shortly thereafter, at 15 months, a “tongue tie” operation was performed where the little skin under the tongue was cut off to enable him to drink better, but it was found that his tongue was enlarged at the back which made him feel nauseous all the time. With the sinus that he also has (narrowed airways), it has been difficult for him during feeding as he choked all the time. At times he would turn blue from one sip of milk, even his own spit.
All his milestones were delayed, he struggled to eat, and refused to continue the moment he started choking. A chromosome test (Fish test) was done by the Pediatrician which showed that Logan has Williams Syndrome(WS).
WS has been found to be the opposite of autism in many ways, but has many of the same symptoms and behavioral tendencies. Logan is just over-friendly and very social. He can say words which is a blessing, as many children with WS are “non verbal” up to the age of 10 and older.
He was sent for, and still has to do many tests. One of these was an “echo” where they found a stenosis (such as a narrowing in his descending aorta). He did a barium swallow, where they found an obstruction in the throat and also a vascular ring that presses against a vein which causes his own body to “strangle” him.
During an operation they discovered more veins running in places which were never picked up on scans. Logan has to go for another heart surgery where the stenosis and a bypass of these veins must be relayed, and is awaiting a date. Meanwhile, for the rest of his life, there is a chance that he could have stenosis all over his body, very serious heart conditions are linked to WS. He still has unexplained stomach pain and nothing can be done about it.
Logan will be depended on someone to take care of him for the rest of his life. He suffers from anxiety attacks, and has OCD and ADSD.
Please support our bracelet initiative to raise funds for Logan, your contribution will give him a chance at a better quality life.
Alternatively, please consider a donation. Any and all donations welcome. REF: Logan Clarke.
Fundraising for Logan Clarke
Musical Motivation Bracelets
Musical Motivation Bracelets for Logan; consisting of royal blue and silver wooden beads with crystal, silver and diamante fillers.
Hein Müller is a 13 year old boy with Cerebral Palsy. He is very delayed in all his development milestones and needs 24 hour care and supervision. He was able to walk a few years ago, but sustained a serious injury on his knee after a bad fall accident, and for that reason he can no longer walk. However, Hein has taught himself to walk on his knees and that is how he moves around all day.
In 2020 Hein had major surgery on both his legs, some of the procedures done on his legs: * Knee extensions and that needs to be taken out. * Removal of his patella in one knee * Both his ankles had screws put in.
In February 2022 Hein had the plates and screws removed from his legs. He also had new screws put in to manipulate the growth of his left leg.
Hein’s legs are very weak, he needs Physiotherapy to help him get his legs stronger for the chance to stand or walk one day. He cannot move on his own anymore and is fully dependent on a wheelchair.
Please open your heart and support our fundraising initiative for Hein. All profits from the “Unstoppable Bracelets” are donated towards his ongoing medical care and therapy.Together we CAN make a positive difference in his life!
Alternatively, please consider a donation. Any and all donations welcome. REF: Hein Muller.
“Life is a beautiful gift and it’s our responsibility to live it to the full, that is what I plan on doing!” – Kerry Walsh
“My name is Kerry Walsh, I was born on the 22nd of October 1997 in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. I was taken to the doctor where I was diagnosed with low muscle tone. We tried months of physical therapy but unfortunately, there was no improvement. I was then sent for a muscle biopsy in my neck. They discovered that I had SMA (Spinal Muscular Atrophy). I was given the life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had.
That plan didn’t work for us because we were not just going to give up! I am turning 21 this year and I’m not planning on slowing down anytime soon. As a family, we take every day as it comes and always hope for the best.
As a child, I coped quite well in school. My parents sent me to a mainstream public school (Bryandale Primary school). I have a very low immune system, therefore, I was often ill with pneumonia. This led to me missing a lot of school days, but I always managed to catch up.
At the end of grade 6 we decided to start looking at possible high school options. Didn’t seem like it was going to be a complicated process, but nothing is as it seems, and it was going to be one of my life’s defining moments. We tried a lot of the public and private school in our area and every one of them said “no.”
We were left with two options that were not close to home or in our budget. I ended up going to a private school [Summit College] which was extremely accessible and accommodating. I managed well in high school. These events of needing to go to a school out of our budget led to the start of The Kerry Walsh Trust, which we used to host fundraisers to raise the money needed for my medical and educational requirements. Over the years we have had many successful fundraisers like the 94.7 ride for a purpose, Barnyard fundraisers, and charity golf days. The fundraisers now are aimed at also being able to give back.
At the end of matric I wasn’t sure what I wanted to do with my life, I decided to take a gap year and figure out my place in this world. During this time I had a “never say no” attitude. I was going to try everything that I could – and so I started my motivational speaking campaign @KmotivationSA.
I started with motivational speaking in high schools to encourage students to live life to the fullest, take advantage of their opportunities and to love all kinds of people, because everyone has a story, some are just a little more noticeable. I grew so much threw doing these speaking engagements and gained a lot of exciting opportunities from getting my name and story out there. I started a Twitter rating system so that people with disabilities knew the places to go that was the most accessible. I am extremely passionate about changing the level of accessibility in South Africa, because everyone deserves to go out without the fear of the premises not being accessible.”
Kerry was an ambassador for the Nappy Run 2016-2017, and was nominated as a Margaret Hirsch Women in Business 2017-2018.
Support Kerry in her mission to raise awareness about Spinal Muscular Atrophy (SMA)
SMA Awareness Bracelets
SMA Awareness Bracelets consist of silver, coral and mint green wooden beads with crystal, silver and diamante fillers.
Charm options: Hope / Tree of Life / Awareness Ribbon.
“Mikayla Brown was diagnosed with Cerebral Palsy when she was 9 months old. She is unable to talk, sit, crawl or walk; unable to do anything for herself. When she was diagnosed, mom had to leave her job in order to take care of her. Mikayla has four other siblings and her dad is the only breadwinner in the house.
She has been attending intensive therapy as well as Oxygen therapy at Neurogenesis in Fourways Johannesburg. These therapies are mainly sponsored.
Mikayla has epilepsy and has to go for regular check-ups at a Government hospital where they provide her with medication because there is no medical aid. She also has Cortical Visual Impairment, but her vision has improved because of the Oxygen therapy. We would like however for Mikayla to receive more ongoing therapy as well as Oxygen therapy as we have seen so much progress but we are unfortunately not able to send her now as funds are a bit low. It was discovered that Mikayla now has a left hip dislocation by X-rays. We pray it gets sorted out as soon as possible and we are hopeful.”
Mikayla and her family depend on sponsors and fundraising to be able to provide for her ongoing therapy, as well as additional equipment when needed. The are trying every possible way to assist Mikayla reach her full potential.
Please support our fundraising initiative for Mikayla – all proceeds of her bracelets (see below) are donated towards her ongoing medical care and expenses. Together we CAN make a difference – one bracelet at a time!
Alternatively, please consider a donation. Any and all donations welcome. REF: Mikayla Brown.
Fundraising for Mikayla Brown
Hope for Mikayla Bracelets
“Hope for Mikayla” Bracelets consist of pink and black wooden beads with crystal, silver and diamante fillers.
Joshua Nel was born by emergency C-section in 2004, at 28 weeks gestation, weighing a healthy 1200g . During his 6 week hospitilization, he had one blood transfusion, three hernia operations and suffered jaundice, to name a few of the exhausting hurdles. Fourteen years followed and Josh had to go back to hospital only once with the Roto Virus.
Fast track to 2018 and Joshua is half way through his first year in high school, loving life, and enjoying playing the Cello, progressing with Karate, and filling his afternoons with school activities. In June 2019 he started complaining of occasional headaches. In August he went to the Doctor for a full assessment, including his eyes. She thought perhaps it was sinus related so he took medication. A month later there was no change and he went back for a different set of medication, and talk of setting up an MRI scan, “just to be safe”.
Josh went on to see a Chiropractor, just to make sure that his ongoing headaches were not spinal related. On the second visit, Friday 2nd November 2018, the Practitioner urged to have Josh’s eyes checked one more time. The Optician was thorough. She spent a long time looking at the back of his eyes and referred him to an Opthamologist, who immediately took a scan of Joshua’s optic nerve, which showed extreme swelling. Josh was booked immediately into hospital for an MRI scan and lumbar puncture.
On the 6th of November 2018, the news came that would forever change the road forward for Josh and his family when he was diagnosed with a brain tumour. The immediate problem Josh was facing, was increased cerebral fluid blocking one of his ventricles, so surgery was performed to divert the fluid internally. This alleviated the pressure behind the Optic Nerves, and Josh proudly showed any interested parties his war scar.
The following week, the Theatre was cleared for the whole day to perform the most complicated brain surgery. As with everything in Josh’s life, his mantra is “Go big or go home”. A procedure which should have taken six hours, turned into a harrowing ten hour surgery. The Pineoblastoma, (a specific kind of tumour), growing since before he was born, is located on the Pineal Gland, which is the size of a rice grain, and is situated almost in the dead centre of the brain itself. Any wrong turn and he could have possibly died, or, remained a vegetable for the rest of his life.
Fast forward to when the ICU Nurses came to the waiting room to announce that the operation was over, and that Joshua would be returning to the ward, and they warned us that he would be ventilated. An hour later Josh took it off. For his own safety, it was then decided to give him the nasal form of ventilation, hooked around the ear, which, of course, was again gone by the following day, as expected.
“As a Mother, to see your innocent child lying in bed, hooked up to machines with wires coming out of his neck, head, arms and every other conceivable place on his already slim body, is enough to make the most hardened person buckle, but I am his Mother, and needed to remain strong and courageous, just like Josh.”
When Josh woke up, he couldn’t move, speak, eat or even remember what transpired five minutes ago. The Pathology report indicated that Joshua’s tumour was a malignant, Grade IV Pineoblastoma. Unfortunately the Surgeon could only remove around 70% of the mass due to the balance calcifying on his brain stem, and recommended that Josh go for a consultation at a Hospital which specialises in Academic Oncology Research.
Once there, he would have to endure 6 weeks of Cranial Radiation and Chemotherapy thereafter. Joshua’s Tumour represents less than 1% of the world’s population, and it is his mother`s belief that they wanted him as a “Case Study”. She began researching, and suddenly, as if like a miracle, an Alternative Healing Centre presented itself to the family. He was not treated as a science experiment, he was “seen” as the fighter he is, a beautiful soul, a positive energy source.
Josh’s story is not about being a victim, it’s about determination
and a Mother’s unfailing love for her son. For others to be able to
relate & understand the bond, the desperation at times, the daily
struggles that Josh is fighting & overcoming like a true Warrior, in
a situation that few can, or would, understand, unless they had, or are
currently walking, a similar path.
Josh is currently still in alternative treatment and his second MRI on the 9th July has showed another reduction in the residual tumour. He goes to a holistic clinic in Stellenbosch 3 times a week and the traveling costs etc. is overwhelming, especially as medical aid do not recognise alternative healing practices.
Whilst the cost of his hospital stay and two brain operations is largely covered by medical aid, his further & ongoing treatments leave a shortfall of approximately R200 000. Mom is not working and funds for medical treatment are desperately needed.
Joshua endured a year of holistic treatments and returned to school in 2020. He continues to require ongoing maintenance and supplements which are not covered by medical aid. Joshua has achieved incredible results from his perseverance, determination and sacrifice and we would like him to feel inspired to continue with his journey.
James 1:12 Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life, which the Lord has promised to those who love Him.
Update 10 March 2021from mom, Vanessa: “Josh and I met with the neurosurgeon on Monday 8 March. He advised that since the last 3 MRI’s have shown growth (according to him) that he will not be doing anymore scans as the outcome is inevitable for the malignant brain tumour. We stand on faith as always and are grateful for each day he has quality of life. Thank you for everyone’s prayers and we ask for this to please continue.”
You can help by supporting our bracelet fundraising initiative for Joshua to help improve his quality of life – all proceeds are donated towards his ongoing medical care and expenses. See details below.
Alternatively, please consider a donation. Any and all donations welcome. REF: Joshua Nel.
Fundraising for Joshua Nel
Perseverance is Key Bracelets
Perseverance is Key Bracelets consist of navy and grey wooden beads, white marble beads and crystal, silver and diamante fillers.
Noah Smit is a 7-year-old boy from De Doorns in the Western Cape who was diagnosed with mixed cerebral palsy– dystonic & spastic quadriplegic cerebral palsy. At the young age of 1 and a half years, the Neurologist said he would probably need an electronic device to communicate, and that he won`t be able to walk or talk.
Noah communicates through sounds, babbling and pointing. He can say a few words like car, cat, dad, and grandpa – but he still can not sit, stand or walk. Noah is a bright young boy and there is nothing wrong with his comprehension, but he is trapped in a spastic body with a mind of its own.
He needs daily therapy, but only receives therapy once or twice a month, as this is all that the family can afford at the moment. They are hoping to take him to America or Greece for SPML – Selective Percutaneous Myofascial Lengthening – a type of minimally invasive surgery utilized to relieve tension from muscle spasticity; used to treat children who have CP. This treatment is not a miracle, but can be life-changing for him as this will reduce the spasticity, possibly give his body time to learn how to sit or crawl or walk – and will allow time for the brain to rewire.
Mom doesn’t have to look after him full-time anymore as Noah spends half-day in a Special Needs Center in Worcester. Dad still works full-time to provide for the family.
Please open your heart to Noah and his family by supporting our fundraiser. All proceeds from the “Hope for Noah Bracelets” and the “Strength through Faith Bracelets” are donated towards his ongoing medical care and expenses where needed. Together we can make a difference in Noah`s life and give him a chance at a brighter future.
Alternatively, please consider a donation. Any and all donations welcome. REF: Noah Smit.
Conor van Baalen started getting sick when he was 22 months old, and at 24 months a kidney biopsy was done which showed that he had Focal Segmental Glomerular Sclerosis (FSGS).
FSGS is a rare kidney disease, which is not easy to treat, and each patient reacts differently to the treatments. FSGS is not a single disease, but a pattern of kidney damage and one of the most common causes of nephrotic syndrome, especially in children and adolescents.
His Nephrologist tried several different treatments and by the end of 2017, they confirmed Conor has an FSGS type that is Steroid Resistant. The only way forward is a kidney transplant. The kidney transplant is expensive, but the donor account also needs to be taken care of, together with the medicine and post operation care. Follow Hope for Conor on Facebook for live updates on his journey.
Please help us to raise funds for Conor and his ongoing medical expenses. Together we can change his world, one bracelet at a time.
Update 26/02/2020– Kidney Transplant: “Today`s news are great! Danie still in High Care but already got up out of bed this morning and catheter removed. Still challenged with a lot of pain, as can be expected, but body functions normal. Conor still in Transplant ICU and the ventilator removed. Although under strong pain medication he can communicate (a bit). On his mom’s answer that he cannot get food, he said: “I’m starving”. Conor’s creatine has come down to 70 in 24hrs!! This has been a constant 600 to 655 for the last years (normal range is 60). He passed urine which show normal function. Blood pressure still a bit high but under control. Such wonderful news! Thank you everyone for your support. We feel so blessed!”
Fundraising for Conor van Baalen
Hope for Conor Bracelets
Hope for Conor Bracelets; consisting of grey & mint green wooden beads with crystals – and a Hope-Awareness ribbon, Moon with Star, or Love charm.
Mia Booyens has been through so much already in her short life. In 2016 she was diagnosed with Down Syndrome, Edward Syndrome, CHARGE Syndrome, Noonan Syndrome, Atrial Septal Defect (ASD) and Coloboma of the iris. Mia also had open-heart surgery at Netcare Unitas Hospital in Centurion in 2017.
Though doctors did not see any chance of her being able to talk, crawl or walk; she beat the odds and today she is both talking and crawling.
She went for physio to see if it would help her to walk, and it helped a lot, but it still wasn’t enough to get Mia to walk. She then went on to the Netcare Jakaranda Hospital in Pretoria where the doctor determined that the tendons of her feet were too short. He also discovered that her hips were out on both sides by 50%.
Mia has to go in for procedures to lengthen both her feet`s tendons as well as a hip operation. After that, she again has to go back to physio so that she can learn to walk, and for assistance during the recovering process.
Please help us raise funds for Mia`s – all proceeds from the sales of her bracelets are donated towards her ongoing medical care and expenses. Together we can give her a better quality life and a brighter future.
“On Monday, 9 November 2015, our lives changed drastically. Mianè (only 19 months at that time) had a near drowning accident at her family home in Witbank where her heart didn’t beat for 45 minutes before hospital personnel resuscitated her.
As a result of this, our Warrior Miané is diagnosed with Microcephalic Spasticity Quadriplegic Cerebral Palsy with Global Developmental Delay, Intellectual Disability, Pseudobulbar Palsy, Epilepsy, Cortical Vision Impairment, Obstructive Sleep Apnea, and she has Dislocated hips and Scoliosis Kyphosis of the Thoracic Spine. Currently she needs help urgently to undergo gallbladder removal surgery and teeth removal surgery coming to an estimated amount of R92 042.90. She also needs help with her monthly therapy, medical and daily needs.
At the moment Mianè is doing all the therapy possible to help her build new neural pathways. She is currently doing Chiropractor sessions, Occupational therapy, Cortical Vision Impairment sessions, Physiotherapy and ABM therapy. She is making fantastic progress in her therapy and everyday is still a miracle from God.
As a single mom who wants to do everything I can to make these things possible for her by selling goods and services on our Online Shop: Warrior Miané’s Little Shop, we can still not do it without the help from the public.
We ask the public to please support us. Follow her facebook page – Warrior Miane – for daily updates on her story and details. You can also contact her mom, Claudette Ainslie on 071-462-7589.”
Become part of this miracle journey by supporting our fundraiser for Miané – all proceeds of the “Just Be Fabulous” Bracelets are donated towards her ongoing medical care and expenses. Together we can make a positive difference, one bracelet at a time!
Alternatively, please consider a donation towards the cause. Any and all donations welcome. REF: Miane Ainslie.
Fundraising for Mianè Ainslie
Just Be Fabulous Bracelets
Just Be Fabulous Bracelets for Miané; consisting of light yellow, silver and white wooden beads with crystal, silver and diamante fillers.
On the 10th of August 2018, Karlien`s father was busy moving their kitchen to a better location at home as he was working late most of the evenings, and it was becoming increasingly difficult for mom to keep an eye on both children. Karlien was 2 at the time, and their baby, only 7 months old.
Mom, Karin, took the children to visit their grandparents to give him time to cut most of the wood. By the time they came back the big grocery cupboard has not been fitted yet. Karlien and her father walked across to grandpa who live behind them to get the screws to fit the cupboard to the wall while mom was out shopping for their family holiday booked at Buffelspoort the next week.
As she had no kitchen to pack everything away, everything stayed in the bags. Karlien went thru the bags and found the easy-bake cookie mix and asked if they can make it – mommy explained that they won`t be able to at the moment, as daddy needs to finish up the cupboards first – and that`s when Karlien decided to put it in its place, which was the grocery cupboard.
She tried to open the doors and the whole cupboard come down on her. She wasn’t moving and blood come out of her ears and nose. They rushed to the hospital closest to home only a minutes’ drive away or so. The doctors and nurses ran in and out to get more equipment to stabilise Karlien. Once she was stabilised they transferred her to Union.
At Union they did a CT scan and found the injuries to be very serious. The trauma she sustained is the same as a big impact car crash at high speed. It was not necessary to operate at that point, but they had to monitor the swelling on her brain. The next 48 hours were the toughest the Roets-family have ever faced, until she started showing improvement.
She went off the ventilator, started moving and talking, and all was going well until the 20th of August – she walked for the first time since the accident, but later that day she had a fit. She was rushed for another CT scan and it showed her brain was submerged in blood. One of the veins burst in her brain. An emergency operation was done where they fitted an external drain to help relieve pressure on her brain, and she was back on the ventilator. After stabalising her, a couple of operations was performed as well.
Karlien was doing better to the point where she was sent to rehab. She was there for close to two weeks and the family got to see her on her 3rd birthday, 27 October. On the 29th she stopped breathing and they had to resuscitate her. She was rushed back to Union and they found the shunt was blocked due to an infection and did a replacement (the shunt was fitted in an operation to help relieve pressure build up from her brain). The CT scan thereafter showed that the shunt was working, but had a worse story to tell. Doctors told the family to prepare as Karlien might already be gone.
The next day during their visit Karlien moved her head and feet, and started to show little improvements. Doctors told them not to get their hopes up and that they should still be prepared for the worst. She grew a little bit stronger everyday to a point where she could go home, but is still on a ventilator.
The medical aid is supporting the family with a trauma benefit for Karlien, but this is only limited. Karlien’s 24 hour nursing (R18000 per month) came to an end at the end of March, and her monthly supplies like nappies etc. amounts to R6500 per month.
Karlien is currently being cared for at home. She is still on the ventilator and gets therapy during the week. She is not mobile, but she improves every day, and she also began to breathe more on her own. The doctor said the improvement was astonishing, and that she could get off the ventilator within the year. They will be going in to ICU again in 2 months time to see just how much Karlien can get off the vent.
Both parents work at a small family business which took a knock with them not being around for 5 months. Mom is still not back at work, supporting Karlien and trying to do what she can from home. Dad is back at work trying to provide for his family, but they need help. Please open you heart to give Karlien a chance at a better life, and a brighter future.
Update January 2020: Raising funds for Karlien to go in for ventilator weaning for home-care in February, and stem-cell treatment in March (R17000).
Rhyn Scheepers is the son of Carmen and Martin Scheepers who hails from Bloemfontein. At 7 months old they noticed shaking in his left arm and took him to a Pediatrician who suspected epilepsy. An EEG showed he was clean, but the MRI showed a small spot in the middle of the right brain lobe.
At first they suspected Leukodystrophy Demyelination. Another visit to a Neurosurgeon in Pretoria showed the possibility of a lower-grade tumor. The doctor also took Rhyn`s scans and blood results to a Convention of more than 1000 medical professionals. Fifty percent of them were Neurologists who were just as puzzled and unsure. It was suggested that they wait 6 months.
On the 22nd of February 2018, Rhyn had brain surgery, but only 30% of the tumor could be removed as it was intertwined with the brain. The part that stretches to the other side could not be touched as it would leave him paralyzed.
After two years of no diagnoses, two year old Rhyn Scheepers was finally diagnosed by St Judes Children Hospital overseas. This little guy has gone through so many scans and also a big brain operation, but he handled all of this like a champ.
Rhyn is diagnosed with a Diffuse Low Grade Glioma. In short, this means that he has a tumor that is growing very slowly. There is unfortunately no cure. The treatment described is chemo. But also, chemo can’t cure this type of cancer. It can stop the tumor from growing while he is using the chemo, but unfortunately that is all that can be done.
Mommy and Daddy decided to wait with chemo. Rhyn has no symptoms at all. They want to try and save their little boy’s life with prayer and a boost of natural products. Products that has cured people and shrunken tumors. Unfortunately no medical fund pays for natural treatment and it is very expensive.
Please support our fundraising initiative – all proceeds from the “Dream Big Little One” bracelets are donated towards his ongoing medical expenses that are not covered. Together we CAN make a difference in Rhyn`s life, and give him a fighting chance.
Alternatively, please consider a donation, any and all donations welcome. REF: Rhyn Scheepers.
Fundraising for Rhyn Scheepers
Dream Big Little One Bracelets
Dream Big Little One Bracelets consist of beige, silver & mint green wooden beads with crystal, silver and diamante fillers.
In October 2017, a gorgeous two-year-old boy, Keanu Moore-van de Giessen, was diagnosed with Stage 4, High-Risk Neuroblastoma Cancer. Keanu was diagnosed with two tumours, one very small tumour on his adrenal gland, and a 3cm mass behind his aorta, against his spine. In addition, he had cancer infiltration in 65% of his bones and bone marrow.
He commenced with the Rapid COJEC Protocol in October 2017 and completed his eight sessions of chemotherapy in January 2018. Around Day 40 of his chemotherapy, his bone marrow was morphologically in remission. His evaluation scans (MRI, CT and MIBG) and bone-marrow biopsy, showed no sign of the disease in his bones and bone marrow. The mass at the adrenal gland has been successfully removed, and the mass against his spine has been reduced to unmeasurable slithers and open-chest surgery is too much of a high risk.
March – May 2018: Keanu undergoes surgery to remove the tumour on his adrenal gland. He also receives more chemotherapy to shrink the tumour behind his heart. The chemotherapy destroys the remaining tumour and Keanu is declared NED (No Evidence of Disease).
June 2018: Keanu is admitted to Groote Schuur Hospital for a stem cell transplant, where he remains in isolation for 4 weeks. At the same time it is confirmed that Keanu will go to Sant Joan de Dèu (SJD) Children’s Hospital in Barcelona, Spain, for immunotherapy treatment…departure date 17 September 2018.
August 2018: Three weeks of radiation commence. Keanu handles the radiation very well, with only some nausea and vomiting as side-affects.
September 2018: Keanu is admitted to hospital for severe sepsis. The Hickman Line is to blame and it is removed. Unfortunately this also results in the departure date for Spain being moved out to 1 October 2018.
October 2018: Keanu and his family arrive in Barcelona, Spain. SJD Hospital immediately commences with tests and scans to confirm that Keanu is still NED. Immunotherapy officially started on 22 October 2018.
March 2019: The family arrived safely back in Cape Town – Immunotherapy completed and Keanu is in Remission!
April 2019: Keanu and Mommy flew to the Helen De Vos Hospital, Grand Rapids, Michigan, USA, to start a maintenance tablet, DFMO. The trial is being run by Dr. Gizelle Scholler.
“We believe that by using DFMO to target an important cancer stem cell pathway to ‘turn cells off,’ we may prevent children from relapsing. Cancer cells have pathways that drive the cancer to grow and DFMO targets a specific pathway to turn these cells off.” DFMO is well tolerated and a “quality of life” treatment.”
June 2019: Follow-up evaluation MIBG scans reveal our warriour remains in remission, therefore they will be leaving on their second journey (two-year treatment) to Michigan.
The #Cure4Keanu campaign is aimed at raising funds to allow Keanu to receive life saving immunotherapy treatment not available in South Africa. The price tag for this treatment is R5 million. The campaign has thus far raised R3.8 million. Please support us in raising the remaining funds to give this little boy a fighting chance.
Neuroblastoma accounts for 6% of paediatric cancers and accounts for 50% of all cancers in infants, making it the most common tumour in infants younger than 1 years old. The number of cases worldwide is about the same, which indicates that environmental factors do not seem to have an influence on Neuroblastoma occurrence. While the prognosis is quite favourable for low to moderate risk patients (80% to 95%), high risk patients have a 60% chance of relapse with no known cure for relapse Neuroblastoma. This statistic can only be improved if new treatments are developed through research and treatment trials, and made available to all children. Through education and increase in public awareness we can make a difference.
Reece Trumpelmann was diagnosed in 2016 with Gorlin Goltz Syndrome.
After receiving a bump on his jaw while playing on a jumping castle, he was taken through to Steve Biko Hospital where he was X Rayed and tested extensively. The doctors discovered he not only has Cancer, but Gorlin Goltz Syndrome, BCCNS – an extremely rare condition which is virtually unknown in South Africa.
In South Africa, there are only 3 known cases, and incidences reported worldwide range from 1 in 50,000 to 1 in 150,000. Gorlin Goltz affects multiple organs and need a multi-disciplinary approach. After many months and hugely expensive genetic tests, it was established that Reece has the PTCH1 and Sonic Hedgehog Pathway genes present, so gene therapy is not an option.
“Gorlin Syndrome, also known as Nevoid Basal Cell Carcinoma Syndrome, is a condition that effects many areas of the body and increases the risk of developing various cancerous and non cancerous tumors. Gorlins is caused by the loss of functions due to mutations in the tumor suppressor gene Patch1 which encodes the Sonic Hedghog Pathway. It is an autosomal dominant inherited disorder.
You get different levels of this syndrome but unfortunately Reece has been hit hard with most of the criteria. Currently, some of his symptoms are: Multiple odontogenic tumors in his jaw which is attacking him constantly, he has had over 40 removed and lost 16 teeth, he has had multiple bone grafts as well, Multiple basal cell carcinomas, Extensive Calcification of the flax celebri, Scolios, Kyphosis, Bifid rib, Major sinus issues, Deviated Septum, Endocrine system problems, Heart problems (fibroma), GERD stage 4, Palmer amd Planter pits, Hydrochephylys, Glaucoma, and Sleep apnea.
His current specialists are: Pediatric oncologist, Geneticist, Maxilofacial surgeon, Neuro Surgeon, Cardiologist, Dermatologist, Endocrinologist, Ophthalmologist, Specialised Dentistry, ENT, and Plastic Surgeon.
As you can see, it`s a lot because it`s a multi system disease. Reece is on a top medical aid (we are really struggling to pay it) but unfortunately we have huge co-payments and bills with regards to all his treatment and needs. We take it one day at a time with this kiddo because today he can be great but tomorrow can be a different story.
Reece has a chronic illness and it is very rare. We are struggling to keep on top of it because of all his symptoms as well as the financial strain. However, I will never ever give up fighting for this warrior. He has been to hell and back. He has had more operations than I can remember since he was diagnosed in Feb 2016.
This syndrome is extremely rare and because of that we often find ourselves having to educate Doctors. We have finally after a long road found a magnificent team that truly has Reece in their best interests. I am so grateful. Reece needs so many things and tests and procedures done at the moment, and because of the finances, I just cannot do it. Our medical aid runs out in Feb already and as you can imagine, the bills are huge. Some things are not covered at all.
Reece as a person. Reece is a 15 year old boy who has been through more than most of us adults can handle. And he does this with the courage of a lion. He is truly a fighter. And such a beautiful soul.
All I want for Reece is happiness and comfort. I want to try alleviate his pain and discomfort. I am just a mom fighting for my boy. Thank you for reading this and if you feel in your heart please share his story. We truly need help in any way or form. God bless you all.” – Marsha Trumpelmann
Supporting our fundraising initiative is way to get involved and make a significant difference in this young man`s life. Together we can change his world, one bracelet at a time!
Alternatively, please consider a donation. Any and all donations welcome. REF: Reece Trumpelmann.
Deliveries: Please note that items are made by hand and on-order. Delivery may take between 7 and 14 working days after payment has cleared in our bank account. Direct Bank Transfers: Should we not receive payment or POP within 3 days the order will unfortunately be cancelled on our system. Shipping Policy
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