Lirie van der Merwe is 10 months old and has paraplegia from the chest-line down, respiratory inability, multi-lobar lung collapse, osteopenia, and epilepsy.
Lirie was born at 32 weeks. After 4 weeks in the NICU she suffered a neck injury that led to paraplegia from the chest-line down. Due to this, her diaphragm is paralyzed and she is unable to breathe on her own and is on a home ventilator to breathe for her. She also suffered from a femur break due to her bones being so brittle.
Lirie is currently at home but her home-care is R28 000.00 per month. She gets her feeds through a feeding tube and she is suctioned regularly. She also has a cough assist to get her secretions loose and keep her lungs from collapsing. She has a vigorous daily medical and mediation routine that needs to be followed. The Medical aid is depleted, and Lirie needs her physio and speech therapy sessions.
By supporting our fundraising efforts you can be directly involved in making a positive difference in Lirie`s life. All proceeds from the “Shine Your Light” bracelets are donated towards her ongoing medical care and expenses. Together we CAN change the world, and help a child in need!
Alternatively, please consider a donation; any and all donations welcome. REF: Lirie van der Merwe.
Fundraising for Lirie van der Merwe
Shine Your LightBracelets
The “Shine Your Light” bracelets for Lirie consist of pink wooden beads with crystal, silver and diamante fillers.
“Our precious girl was born at 29 weeks with a weight of 1.24kg. She had bleeding on her brain, a hole in her heart and had blood transfusions quite a few times like most prem babies. Mihleeya also had Laryngomalacia, for which she underwent surgery on the 15th of April 2021.
Mihleeya was admitted several times due to her allergy to Cow’s milk protein – her tummy started to bleed because of it. She was in hospital for bronchitis, where she then also got Rota. On August the 7th, she was already in the hospital for it – when she had her first seizure. We weren`t happy with response from the Pediatrician at the time, and took her to a new pediatrician the following week. Mihleeya had a sonar of her brain done, and they said that she had “hydrocephalus” – water on the brain.
After a week of waiting for just a referral, we made the decision to have her treated in JHB – by this time the seizures were so severe, she had around 30 a day. In JHB, they did a CT scan that showed the fluid is around the brain, and not inside the ventricles as it was initially shown by the sonar. The service in JHB was fantastic, but unfortunately Mihleeya contracted Covid, and she had to be discharged with medication to stop her seizures – unfortunately she still got seizures, but less.
In the meantime, we moved to Amanzimtoti, KZN, and started with our hopeful referrals and wild history, with a new Pediatrician. She is fantastic. God sent her to us. She immediately started treating Mihleeya and ordered an MRI, repeat video EEG as well as X-Rays and CT scans of her lungs, lots of blood tests as well as urine to test for genetic disorders. And this is where we are now.
Mihleeya’s MRI shows that she has Periventricular Leukomalacia (PVL). PVL is when the inner part of the brain gets hurt or dies. Mihleeya has “severe white matter damage to the brain.”
The white matter in the brain is the part that sends information between the spinal cord and the nerve endings and from one part of the brain to the other parts in the brain. In short: The brain is like a tree: The stem (the spinal cord); The branches (white matter); The leaves (gray matter).
Information should be sent from the stem, through the branches, to the leaves to do basic things like sitting, crawling, walking, talking etc. Unfortunately, Mihleeya’s branches were so badly damaged that the Drs are not sure if she will ever be able to speak – she will be able to understand, because her thinking part (gray matter / leaves) is untouched, but she will not be able to articulate it.
Her brain’s white matter is dead in so many parts, that her brain is smaller in her skull. Where it has to press against the skull, there is currently liquid all around due to the white matter that has died. This is why the sonar showed large ventricles (water on the brain), and the CT then showed the fluid around the brain.
PVL is caused by too little oxygen or blood in the brain. With Mihleeya’s birth she was on the Oscillator as well as ventilated, and long on oxygen. It all played a role. So too did the PVL cause seizures – she has around 40 focal seizures per day – it’s the branches that send wrong signals, and then cause the seizures.
There is no treatment for PVL. She is currently on two types of medication, five times a day, which keep the seizures under control.
Our baby needs intensive treatment and therapy. She needs physio, occupational as well as speech therapy. She will also have to learn sign-language. She will have to go for X-Rays again, follow up EEG as well as another MRI to see if her condition is worsening. Blood tests should also be done regularly to test her Epilem levels – too low, and her seizures will continue, too high, and these are toxic to her body. She is currently receiving Epilim, Keppra, Multivitamines, Zinc, Aspelone and Reuteri drops daily.”
Please open your heart to Mihleeya and support our fundraising efforts – all proceeds from the “Angels and Miracles” bracelets are donated towards her ongoing medical care and expenses. Together we CAN make a difference and help a child in need!
Alternatively, please consider a donation; any and all donations welcome. REF: Mihleeya de Vaal.
Fundraising for Mihleeya de Vaal
Angels & Miracles Bracelets
The “ Angels and Miracles Bracelets” for Mihleeya consist of white, peach and silver wooden beads with silver and diamante fillers.
Kihané Stapelberg is a beautiful, busy and sweet 5 year old girl from Hartebeespoort in the North West Province. She had her first seizure on the 27th of August 2019, and the following year was filled with many obstacles that she had to overcome.
She has intractable epilepsy, nocturnal frontal lobe epilepsy, and temporal lobe epilepsy. Intractable epilepsy is when seizures can’t be controlled by medicines, and is not easily managed or relieved. Kihané does not respond to medication as she needs to, and on top of that, all the current medications are causing issues with her stomach as well so she needs medication to sort out all of the problems and side-effects.
Her epilepsy has caused damage and she needs to go for intense speech therapy and occupational therapy in 2021. She also needs to get rescue IV medication almost once a week to control her seizures. It is a daily battle and a big ongoing financial expense.
Please open your heart and support our fundraising initiative, all proceeds are donated towards Kihané`s ongoing medical care and expenses. Together we can change the world, one bracelet at a time!
Alternatively, please consider a donation; any and all donations welcome. REF: “Kihané Stapelberg”.
Fundraising for Kihané Stapelberg
Dare to Dream Bracelets
The “Dare to Dream” Bracelets for Kihané consist of purple wooden beads with crystals, silver and diamante fillers.
Brodie Snyman sustained severe brain damage at birth due to placenta abrubtion. Doctors said he is a very sick little boy and he had to spend 6 weeks in NICU. He started having convulsion fits and was struggling to drink normally. Brodie was admitted to hospital 3 weeks after he was discharged from neonatal with pneumonia, and was transferred to Sandton Medi Clinic to see Specialists there.
Little Brodie can’t swallow properly and then aspirates. From the severe repeated aspirations, Brodie’s lungs were severely damaged. He was diagnosed with Bronchiectasis lung disease and had to be put on oxygen. They also had to insert a mickey feeding tube in his tummy, so that he can be fed that way.
The first two years of Brodie’s life he spent mostly in hospital due to all kinds of infections as his immune system is very low, so he is very susceptible to viruses and illness.
His muscles are very spastic and requires botox every 6 months, he receives botox in the saliva glands to prevent aspiration as well.
Brodie requires weekly neuro/occupational/speech/swallow therapy, which the medical aid do not cover, He also needs a standing frame, special bath seat, and a specialised buggy for the scoliosis in his back.He also has displaced hips.
Brodie needs to see the doctors every 3 months to check on his lung disease. His chronic medication is very expensive, which the medical aid also don’t cover in full. He needs to be nebulised 4 times a day for his Asthma and Bronchiectasis, and he needs daily chest physio. Brodie also needs 24 hour care as he can’t sit, roll, stand or walk, and he can’t talk either.
Brodie is our Little Miracle boy, as we almost lost him twice due to severe infections. The doctors told us we would be lucky if Brodie gets to 2 year old, but he is a real fighter! He turned 3 years old in March and we are so grateful for every single day with him .
Co-payments for medication is roughly R2000 a month. All Therapy together adds up to R2400 a week if we can afford all 3 sessions.
Brodie’s medical equipment (standing frame, bath seat and specialised buggy) – the last quote received was about R120 000, but that was quite a few months back so the prices may differ.
Co-payments for Brodie’s Botox varies between R5000 and R7000 at the hospital.
Outstanding doctors, pharmacy and hospital bills to be settled which is roughly R11 000.
By supporting the Arms of Mercy bracelet initiative you can help make a contribution to Brodie`s ongoing medical care and expenses. Together we can change his world, one bracelet at a time!
Alternatively, please consider a donation; any and all donations welcome. Please remember to use “Brodie Snyman” as reference.
“Diandrè Labuschagne was born with a mass on the right side of his brain. The prognosis was not very good for him and doctors only gave him 7% chance of survival in the first 24 hours, but this little fighter is still going strong.
On his 35 weeks pre-natal sonar, the Gynaecologist was concerned about a mass in Diandrè’s head and subsequently recommended that a fetal assessment be done. The outcome of the fetal assessment indicated that he will probably be still born or will only live a few hours. It seemed as if there was no hope for baby, Diandrè.
Diandrè was born on 4 April 2020 at 11:17. To everyone’s surprise he was born alive and was taken to NICU right after birth. On Monday 6 April he underwent a MRI scan showing that the tumour was still there and the prognosis was still not good for this little fighter.
He went to theatre 25 July 2020 for a Craniotomy to remove the tumour, it was confirmed that it was an intracranial haemorrhage most likely caused by a stroke that formed an infection that spread to his whole brain and left Diandrè with severe brain damage. He was diagnosed with Spastic Cerebral Palsywith cortical-visual impairment, profound hearing loss and Multifocal Epilepsy. Diandrè is still unable to cry or show any emotions.
Diandrè did not reach any milestones yet but is able to drink his formula.
Diandre’s parents try to keep up with his medical expenses but these parents have two sick boys Diandre’s older brother has a serious immune disorder and needs to be admitted to the hospital monthly to get his polygram (immune boost).
Diandrè needs funds for his monthly expenses like medicine and ongoing therapy to give him a better quality of life. The therapy is also needed to keep his body from getting spastic and to assist with reaching some milestones. At this stage, Diandrè has occupational and physiotherapy once a week. Diandrè is also in need of special seating to keep his posture and for him to be comfortable.”
Please support our fundraising initiative for Diandrè. All proceeds from sales of his “Absolute Miracle” Bracelets are donated towards his ongoing medical care and expenses. Together we can change the world, one bracelet at a time!
Alternatively, please consider making a donation – any and all donations welcome. REF: Diandrè Labuschagne.
Join the group Gebede vir Diandre on Facebook for live updates on his progress and journey.
Fundraising for Diandrè Labuschagne
Absolute Miracle Bracelets
Absolute Miracle Bracelets for Diandrè consist of turquoise and gold wooden beads with crystal, silver and diamante fillers.
Epilepsy, also known as seizure disorder, is a neurological disorder, associated with abnormal electrical activity in the brain. It is marked by sudden recurrent episodes of sensory disturbance, unusual behaviour, sometimes loss of consciousness, and convulsions.
Anyone can develop epilepsy at any stage during their lifetime. The disorder affects both males and females of all ages, races, and ethnic backgrounds. It is not contagious or infectious, nor is it a mental illness or psychiatric disorder.
Factors that may increase your risk of epilepsy:
Age: The onset of epilepsy is most common in children and older adults, but the condition may occur at any age, at any time.
Family history: If you have a family history of epilepsy, you may be at an increased risk of developing a seizure disorder.
Head injuries: Head injuries are responsible for some cases of epilepsy. Reduce your risk by wearing a seat-belt while riding in a car and wear a helmet when cycling, skiing, riding a motorcycle or engaging in other activities with a high risk of head injury.
Stroke and other vascular diseases: Stroke and other blood vessel (vascular) diseases can lead to brain damage that may trigger epilepsy. To reduce your risk; limit your alcohol consumption and avoid cigarette smoking, maintain a healthy diet, and exercise regularly.
Dementia: In older adults, Dementia can increase the risk of epilepsy.
Brain infections: Infections such as meningitis causes inflammation in your brain or spinal cord and may increase the risk of epilepsy.
Childhood Seizures: High fevers during childhood can sometimes be associated with seizures. Children who have seizures due to high fever generally won’t develop epilepsy. The risk will increase if a child has a long seizure, another nervous system condition or a family history of epilepsy.
The underlying causes of the epilepsy is unknown (idiopathic epilepsy) in approximately 66% of cases. Possible underlying causes of symptomatic epilepsy include: A head injury occurring at any age, A birth injury, Alcohol and drug abuse.
National Disability Rights Awareness Month
According to research, 5% – 12% of all South Africans live with some form of disability – and 20% of these have epilepsy – which is double the amount in developed countries. About 1 in 20 people will have an epileptic seizure at some point in their lives, while 1 in 100 will have seizures on a regular basis.
People with epilepsy are still able to do physical and intellectual work, and should not be treated differently. South Africa commemorates National Disability Rights Awareness Month every year from 3 November – 3 December.
All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.
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.
Divan Conway is a 8 year old boy who was diagnosed with Lissencephaly (smooth brain), Cerebral Palsy, and Epilepsy (West Syndrome). He currently weighs 31kg, he can not walk or talk at all, and his mum has to carry him everywhere. Divan also still wears diapers and will continue to do so for a very long time. 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.
He regularly contracts infection in his lungs due to all the mucus and lack of movement. Mom has to clean his throat and nose with a suction machine to remove all the mucus that he doesn’t swallow.
He has a feeding tube because he can’t eat and drink, and also struggles with bladder infections. Because his bladder does not get rid of all the urine, it stays in the back of the bladder and causes infections. It is mom`s duty to empty his bladder for him at home using catheters.
Divan has been admitted to hospital so many times due to all his challenges, and has a long road ahead of him.
Please open your heart and support our fundraising effortsby purchasing his “Little Soldier” bracelets. Divan and his mom need our help with funds to pay medical bills.Together we CAN make a difference in their lives.
Alternatively, please consider a donation, any and all donations welcome. REF: Divan Conway.
Fundraising for Divan Conway
Little Soldier Bracelets
Little Soldier Bracelets for Divan; consisting of peach and white wooden beads with crystal, silver and diamante fillers.
“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.
Antoni is a friendly little boy from Brackenfell in Cape Town. He suffered brain damage at birth due to negligence, and also has Cerebral Palsy and a trachi.
Mom, Marili, cares for him 24/7 as he needs to be suctioned and has seizures. His dad is self employed, and not sure of his income every month.
It has become so difficult to keep up with Antoni’s costs; medical expenses, therapies, special diet… please open your heart and support our fundraising efforts for Antoni, all proceeds are donated towards his medical expenses where needed. Together we CAN make a difference and give him a chance at a brighter future!
Alternatively, please consider a donation. Any and all donations welcome. REF: Antoni van Reenen.
Noah Smit from Swellendam in the Western Cape 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 is now almost 4 years old and 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 is currently his caregiver at home as there is no daycare that can look after his needs, and dad works full-time to provide for the family. Like and follow Noah`s cp journey on Facebook for live updates on his progress and journey.
Together we can make a difference in little Noah`s life and give him a chance at a brighter future.
Fundraising for Noah Smit
Strength through Faith Bracelets
Strength through Faith Bracelets for Noah; consisting of purple, beige & silver wooden beads with crystal, silver and diamante fillers.
Seth Meyer was born on 5 August 2016 a healthy boy, but started having epileptic fits two weeks later. He was rushed to hospital, endured weeks of blood tests and lumber punches, yet they couldn’t find anything wrong.
He then had a brain scan, but when the time came to discuss the outcome – the hospital lost the scan results because the machine was “not working correctly”. Seth was then taken privately for an EEG and started treatment for epilepsy by Dr. Thabiri in Vereeniging.
After going for a second opinion regarding his condition, Seth was diagnosed with Cerebral Palsy and Epilepsy by Dr. Church in Meyerton.
At the age of two he still can not do anything like children of his age are supposed to like sit, crawl, roll over, stand or walk, or even hold his own bottle. He also doesn`t sleep at night, and screams and cries all the time.
Seth`s condition is worsening by the day, and the Meyer-family is in serious need of funds towards an MRI and his ongoing medical treatment.
He is also in urgent need of a stroller/wheelchair, and we hope that with your contribution, we can help make a difference as soon as possible.
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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