PROJECTS
WHAT WE’RE UP TO
Brave Life has many ongoing projects that you can get involved in. On this page, we’re tracking our recent donations and projects in the disadvantaged communities our charity focuses on – those with Down Syndrome and other disabilities.
If you would like to invest, get involved, or donate towards a project, you can use our online donation tool or donate directly to our bank account, the details of which are at the bottom of this page. You can also contact us using the contact form or by sending us an email.
Medical Equipment Donation Project (2023 – Present)
Thanks to donations from private investors, Brave Life donated various medical equipment kits to disabled children in South Africa in 2023. We responded to private requests from families based on the equipment donated and the needs of the families.
Just before her fifth birthday, Mea got a rare form of meningitis which led to a lot of medical complications, and then a brainstem stroke. She was on a ventilator for a few years, but now only needs one when she sleeps. With financial pressures, Mea’s family were happy to receive donations that can support her continued medical care.
Donation:
- 2 boxes of mic-key extensions, 3 loose
- 1 Mic-Key 1.2cm 20FR button
- Zithromax (8)
Value: R13 000
Ryno was diagnosed with a neruological degeneration disease (SSPE) at a young age. his prognosis was not good, because this virus has no cure. He is now totally dependent on his family for everything, but he has fought to survive much longer than the 6 months doctors initially gave him. Due to financial constraints, his family were happy to receive medical supplies to assist in his care.
Donation:
- 8 EnFit Syringes
- 1 box of feeding tube extensions
Value: R3 500
Both Marlo and his mom, Marinet have cancer. Marlo has been fighting Embryonal Rhabdomyosarcoma for a few years, and his mother was also diagnosed with breast cancer. This donation was facilitated by a friendly third party, since Marlo was in Steve Biko hospital at the time receiving treatment. Their fight against cancer has put immense pressure on the family. At the time of the donation, Marlo was in dire need of a new feeding tube button.
Donation:
- 1 Mic-Key Button
- 2 boxes of feeding tube extensions
Value: R11 600
Meet the dear Alyssa, whom Brave Life recently had the privilege of donating medical supplies to. She has holonprocencephly communicating hydrocephalus. She was born prematurely at 32 weeks old. 11 operations later and she is turning two in 2023. She beat sepsis, RSV, and every hospital infection you can get. She also spent her first 6 months in ICU. Due to the financial constraints caused by her medical needs, her family was happy to receive the donation to further her care.
Donation:
- 1 Mini-One Button Kit
- 1 Set of Mini-One Extensions
- 1 Stoma Powder
- 1 EnFit Syringe
Value: R10 000
Zeenat Kader
Donation:
- 3 boxes of mic-key feeding tube extensions
Value: R8 400
Kruche Pelser
Donation:
- 6 EnFit Syringes
Value: R800
Farah Hagee
Donation:
- 2 x Keppra
Value: R400
TNI PROTOCOL
Project
The latest in epigenetics and nutrigenics has given us insights into how nutrients can be used to intervene in biochemical processes that are disrupted in Trisomy 21. Parents across the world, working with the Trisomy21 Research Foundation in America, have started treating their children using what is now dubbed “targeted nutritional intervention”. This protocol guides parents to give their children foods that will foster improvements, as well as specific supplements in specific doses to downregulate and upregulate different compounds in the body. The protocol also includes items to avoid, medications to avoid, and add-ons to support specific issues.
It is a researched and well-known fact that a large percentage of people with Down Syndrome get Dementia or Alzheimer’s in old age. This nutritional protocol aims to prevent this from occurring by supporting typical biochemistry. It has also proven to have many other benefits for those with Down Syndrome.
One example is the cholinergic pathway. Children with Down Syndrome overproduce acetylcholinesterase due to a triplicated gene that is active on the third copy of the twenty first chromosome. The body, in turn, uses all its choline for the overproduced compound, leading to a severe choline deficiency. You can imagine, then, the potential damage in giving a child with Down Syndrome an anticholinergic agent such as is commonly used in eye exams to dilate the pupil.
Parents are advised to avoid anticholinergic agents at all costs in the protocol, while supplementing their children with Huperzine A and Choline. Huperzine A downregulates acetylcholinesterase. When choline is then supplemented and ingested orally in daily foods, the choline can be used for the body’s other needs, normalising the cholinergic pathway. This is a simplified example of the kinds of biochemical explorations that are transforming the lives of Children with Down Syndrome.
These are the basic supplements recommended by the protocol.
TNI PROTOCOL
Project
Firstly, we have begun an education group offering resources and support to over sixty families across the country, with positive results seen in those who have been able to apply some or all of the protocol. This equates to many hours of support, administration, and dealing with customs to bring products into the country.
Parents on this group are able to receive discounts on shipments of supplements that are not currently produced in the country through Brave Life of about 10% of the cost (typically R2000 – R4000 per shipment). Our goal is also to sponsor children who need the protocol but cannot afford it that are on this group, and secondly to begin to produce products currently only available in America locally within the next two years.
BRINGING TNI TO
South Africa Project
In bringing TNI to South Africa, we are working with Dr. S. C. Lehmann, Prof. Danie Du Toit to find options for producing the key supplements that are currently only being made in the USA at an equivalent quality. The formula is very specific, but Dr. Lehmann is currently checking laboratories and discussing the details with pharmacists. Once the process of assessing the capability of labs in South Africa to produce what is needed is completed, we are hoping to produce these very expensive products at much lower costs within the country to give more families access to them.
The idea would not be to profit from the production of these products, but rather to give the entire Down Syndrome community in South Africa access to this powerful form of nutritional intervention. The protocol contains many products, but we are starting with two products that can currently not be found in the country or anywhere else in the world other than Maryland, USA.
We plan to work with a SAHPRA approved laboratory and qualified pharmacists to ensure the best results. Costing is yet to be finalised.
BLOOD SPOT
Research Project
Along with Dr. Lehmann and Prof. Du Toit, we have started explorations for a research project where 15 people with Down Syndrome will be studied to determine biochemical differences between the needs of South Africans with Down Syndrome compared to those in America. The method used will be via Organic Acid Test (Urine Sample) and Dry Bloodspot Amino Acid testing that can give us hundreds of markers to compare.
This will enable us to finetune the TNI Protocol to suite South African people with Down Syndrome with medical research to back suggestions. Currently, the submission is with the University through which we hope to do the study.
TOMATIS METHOD
Research Project
A research project has been proposed in partnership with Dr. Annelize van Antwerp to study the effects of the Tomatis Method on children of varying ages and stages of development who have Down Syndrome. This study will be the first of its kind and conducted at Club 21 School in Centurion.
The Tomatis method has been studied extensively in use for Autism and other diagnoses, but the Club21 School setting and the willingness of teachers and parents to participate presents us with a unique opportunity to learn how it impacts the Down Syndrome population specifically, in the context of schooling. This could potentially open doors for this therapy to be used more often, and we could follow up publication of this research by pursuing ICD10 codes, if the study is a success.
We plan to do this study this year, and it will take about 3 months to complete. There is considerable preparation involved, which includes acquiring the devices necessary for the project. If Tomatis, as a company, cannot sponsor these devices, we will have to fund them at the cost of R40,000 per device and R4,000 per headphone. The study will require 3-5 devices and about 30 headphones.
The Tomatis method has been studied extensively in use for Autism and other diagnoses, but the Club21 School setting and the willingness of teachers and parents to participate presents us with a unique opportunity to learn how it impacts the Down Syndrome population specifically, in the context of schooling. This could potentially open doors for this therapy to be used more often, and we could follow up publication of this research by pursuing ICD10 codes, if the study is a success.
We plan to do this study this year, and it will take about 3 months to complete. There is considerable preparation involved, which includes acquiring the devices necessary for the project. If Tomatis, as a company, cannot sponsor these devices, we will have to fund them at the cost of R40,000 per device and R4,000 per headphone. The study will require 3-5 devices and about 30 headphones.
BRAVE BOX
Project
According to the Down Syndrome Association of Pretoria, around 50 children are born with Down Syndrome in Gauteng every year. As an organisation, we want to reach the parents of these children at this most fragile moment in the journey. Often, celebrations turn to mourning with a surprise diagnosis, and a sadness and grief comes over the family. In this time, it can be difficult for families to reach out for support or to know what comes next in the journey with their newly diagnosed child.
We want to establish a network with hospitals throughout Gauteng to alert us when this occurs, so that we can send a care and support box named the Brave Box to the new parents while they are still in the ward at the hospital. A volunteer has approached us, offering to utilize an established network of representatives who can easily reach all the hospitals in Gauteng within the next few months. Because of the PAIA Act, it is important that nurses understand the Brave Box and inform parents, who would need to reach out to us.
Each Brave Box will contain:
- Information Packs printed especially for these boxes covering key information relevant to the parents and child.
- Clothing items celebrating Down Syndrome.
- Necessities such as diapers, wipes, and similar products.
- Toys celebrating Down Syndrome.
- * Possibly, sponsored items for the child or parents such as books, jewelry, bracelets, cards, magnets, and more to celebrate the birth of their child.
- A checklist to work through with their primary care doctor or nurse of important checks for their child.
We are looking for sponsorships to sponsor items that will go into the box or sponsors who can fund these boxes with a financial donation. We estimate a maximum spend of R3,000 per box, which would equate to R150,000 a year’s spend if we manage to reach .
Once we have the surety that we can provide brave boxes, we will be visiting hospitals systematically to build connections and start reaching new diagnosis families. We plan to kick off this project in 2024, pending contributions and donations.
BRAVE SCHOLARSHIP
Project
It is estimated that nearly 50% of people with disability worldwide never get an education. This is a terrible injustice that we want to help correct. We are proud to announce that this year, thanks to private donations, we are able to offer Brave Life scholarships to four children at Club 21 School for Children with Down Syndrome.
In partnership with the school, we have assessed the needs of children at various phases and allocated sponsorships to those in need, who cannot afford it, but who can commit to bringing their child to school in 2024.
A full scholarship can be costed as per the below, although not all children require full scholarships (for example if they attend fewer days per week or do not require transportation). Our scholarships are almost finalised, and you can meet the candidates below. We look forward to contributing to their education in 2024. If you would like to get involved, we have listed other scholars in need of sponsorship (whether full or partial) below as well. You can, alternatively, also contribute to school fees for the below children for future years.
Full scholarship for 2024: R110 000
SCHOLARSHIP
Recipients
As the inspiration for Brave Life, this young man has overcome many challenges. He spent a lot of time in hospital, undergoing surgeries, and on a drip in the first three years of his life. But thanks to Jesus, he is now a much healthier five year old. He is also on the TNI protocol, and it has proven very beneficial for him.
In partnering with Club21, Aragorn is the first scholar to receive a sponsorship through Brave Life. We want to thank the private donors who made this possible, as well as his wonderful teachers and friends at the school. With your help, Brave can learn and grow and become his best self this year. His sponsorship includes only school fees for the year of 2024.
Meet Tlotlisa – a bundle of joy with a fighting spirit at the age of 6. His journey has not always been an easy one, but one that is a testimony of resilience and strength. Tlotliso’s father, Losti, is a single parent and has invested his life into providing the best possible life for his son. However, the road ahead is not without challenges, and they find themselves in need of a helping hand.
Your generosity can change Tlotliso’s life. He has gladly received the Brave Life scholarship for 2024, but you can help secure his future by sponsoring him in the next few years. His sponsorship includes 50% of his school fees for the year and uniform.
Brent is a 17-year old disabled learner at Club21 School. He is a dedicated learner who has faced considerable hardships over the past year. Tragically, he lost his mother at a young age and his father is faced with unemployment, placing their family in a challenging financial situation. Despite these adversities, Brent’s passion for learning has remained unwavering. His dedication to learning serves as a true inspiration and reflects his remarkable strength of character in the face of challenges.
Club21 School has played a crucial role in nurturing Brent’s special talents and creating an environment where he can truly thrive. We take immense pride in his progress and the positive change he has fostered within the school. Brent is looking forward to continuing his education, even though the financial implications place a significant strain on the family. The Brave Life scholarship he will be receiving for 2024 provides both the means for his education and the vital encouragement and support he needs during this trying time. His sponsorship includes 50% of his school fees for the year and uniform.
Despite her parents working fulltime and dad even got himself a 2nd employment while he is trying to manage his own business, Michaela’s family is experiencing significant financial difficulties. Michaela’s older sister finished high school end of 2023, and is now attending University in Caledon.
In order for the family to meet their financial responsibilities, the family is moving out of their family home. They are going to stay with the grandfather for now. Luckily Michaela loves her Oupa. Her sponsorship includes 50% of her school fees for the year and uniform.
Rochelle Entres is a new student at Club 21 Learning Centre. Her parents (Rubin and Karien Entres) are from a low income group and really struggling financially to make ends meet. Academically, Rochelle has quite a lot to catch up on.
We are excited to have Rochelle in Club 21. Her parents happily receive a brave Life sponsorship for 2024 and are grateful that it will afford her the opportunity to stay at school, since the full fees are well beyond their means. She is already hard at work, settled in with her teacher and class mates, and has made a couple of friends among her peers. If you would like to further sponsor Rochelle, you can consider a further donation to her fees or future years’ fee payments. We also accept gifts specifically for the children from kind donors who wish to bless them individually, if this is your wish.
DONATE TO MAKE ALL THIS POSSIBLE
Brave Life NPC relies solely on donations. Without your help and support, we cannot realise our vison of enhancing the lives of children with disabilities. You can support us in the following ways.
All donations to Brave Life are Tax Deductible.
FNB: Brave Life NPC
Account Number: 6284 077 8057
Branch: 250655