Tag / parents

by Yumnah Jones

Sylvia Sanyanga

Sylvia Sanyanga, founder of The Nate Foundation

Sylvia Sanyanga is a strong, endearing, and innovative woman who has sought a solution in every challenge. She is a proud mother of three young children who has been hailed for her dedication to service. She has been awarded both the Outstanding Community Pillar and the Local Community Based Organization ZCN Awards by the Zimbabwe Community News Network, in 2020, and is also a 2019 Finalist Nominee for the UK Creativity and Arts Awards for Best Event Organizer and Best Community Leader. Sylvia’s story shows us that the pains and struggles that Life present to us are not there for the sake of destroying us but are there to make us cognizant of the needs within a community and to awaken us to our purpose to serve others within that need.

This is Sylvia’s story…

Growing up, as the eldest of three siblings, I was always close to my mother. Everything she was as an individual was what I aspired to be and everything I have achieved since, has been through her undying love and support for us as children. We were, and still are a very close-knit family even after her unexpected passing in January 2021. Her death has hit us hard but her exemplary life; her involvement in the Ministry, her establishment of the Institute of Healing of Memories branch in Zimbabwe, her hospital visitations to the sick and needy has inspired us to continue her legacy of selflessness, compassion, kindness, and God-consciousness. We are because of her and I am because she is.

Since I had such a wonderful relationship with both my parents and seeing the sacrifices, they made for us as a family, I naturally aspired towards having my own family and after meeting my husband, Eddie, I became a mother to my first and only daughter, Natasha, at the age of 25. As a young mother, and from a family of no health complications, it never occurred to us the challenges that lay ahead.  When Natasha was born, she seemed like a perfectly healthy baby girl, even to the doctors, but five years later and through many assessments, she was diagnosed with a hereditary condition called Fanconi Anemia, after experiencing bone marrow failure. It was then discovered that both my husband and I have the recessive gene, and this was a total shock. It was a very confusing and difficult period for us to have to not only discover that it is genetic but to also see our daughter suffer because of this condition.

As time went by, my husband and I started to learn more about Natasha’s diagnosis. Fanconi Anemia is a rare and life-threatening illness and is the most common variant of a disorder called Aplastic Anemia. Fanconi Anemia affects the bone marrow and its inability to produce bone marrow stem cells which in turn produces all types of blood cells that are responsible for the reparation of damaged cells within the body. When an individual’s body does not produce white blood cells, the body cannot fight infection, the red blood cells cannot provide oxygen to the body and a low platelet count cannot stop bodily bleeding. The symptoms of Fanconi Anemia range according to age and person from growth deficiency, abnormal skin pigmentation, unexplained fatigue, easy bruising, nosebleeds and leukemia or solid tumors. However, some children born with Fanconi Anemia, do not show physical signs of Fanconi Anemia and therefore no one could determine anything out of the ordinary with our baby girl. 

After Natasha’s diagnosis, in 2013, we were advised that she needed a bone marrow transplant. Quite sadly, there was no medical institution in Zimbabwe that could perform bone marrow transplants and there still is none. As we conducted further research, we discovered that not only was a bone marrow transplant a life-threatening procedure, but it is also very expensive one. It was a very difficult and stressful period for us as a family because we did not have the resources to give our child the best treatment available, but my husband and I decided, to walk in faith and, that we were going to do everything within our power to give our daughter a fighting chance.

Since Zimbabwe did not have the available facilities, and South Africa was too costly, we then shifted our focus beyond borders, to a cheaper option, and found India to be able to assist with our daughter’s condition. We began a fundraising campaign to raise US$100,000 which was required for the bone marrow transplant (US$45,000 for the transplant, US$35,000 for the donor and US$20,000 for airfares and living expenses in India for the entire family for six months). With only two days before the scheduled day of departure to India and having raised only US$23,000 we later received incredible news that an anonymous donor paid for the full transplant cost and was ready to pay US$35,000 if any of us were not a match for Natasha. They also advised us that we could use whatever we had raised for travel and living expenses while in India. It was an absolute miracle!

As a family, we travelled to India. Both my husband and I were not a match for Natasha but our 3-year-old son, Raymond, was. Raymond is our miracle child; he was born perfectly healthy despite Fanconi Anemia being a hereditary condition and us as parents having the recessive gene. Raymond was the perfect match for Natasha, and she received her life-saving treatment without any major complications. As parents, it was never easy to ask Raymond to be his sister’s keeper, but we took that decision as a family because by the end of it all, family is everything to us.

While the operation was a success, the bone marrow transplant does not cure the sufferer of Fanconi Anemia, but it extends their lives beyond the life expectancy of 18 years. As a mother, it does not matter if the doctors say your child has 18 years to live or 40 years to live. As a mother, you will give your child everything that you can to give him or her the best chance at Life, no matter what. I felt that God has bestowed us with this privilege of raising a special child and to treat this Gift of Life with the greatest honor.

In 2015, two years after Natasha’s successful treatment, we were gifted with our third child, Nathan. Nathan, which means God’s Gift, was also born with Fanconi Anemia but unlike Natasha, Nathan was born with physical deformities, which made it easier to detect. His physical deformities included bilateral club hands, an absent radius, no thumbs, an absent right kidney, and severe hearing loss. When he was only two months old, he had to undergo surgery as he had a right inguinal hernia. At six months old, he had corrective surgery to centralize his right hand and one and a half years later, when he was 2 years old, he had another centralization for his left hand. The corrective surgeries would have cost us US$40 000 but were performed pro bono by a team of plastic surgeons from the University of San Francisco that were based in Zimbabwe. We are forever indebted to this amazing team for their selfless contribution because ever since then, Nathan has had full use of his hands and is a thriving and budding artist.

In 2018, when Nathan was 3 years and 6 months, his bone marrow failed, and we once again required a bone marrow transplant in India with Raymond pulling through for us once more. However, there were complications that came with the surgery. Nathan endured numerous infections such as a terrible adenovirus (a common virus that causes a range of illness and cold-like symptoms), a graft versus host disease as he was a haplo-identical match (with his brother Raymond), and had to be in ICU (where at one point we were told to prepare for the worst).

All through this, and my children’s struggles, I was also battling with my own issues. In the years since Natasha’s birth, I have suffered from cysts and adenomyosis. While Nathan was undergoing his treatment in India, I was in severe pain with the growth of a cyst. As a mother tending to a sick child, I put his health before mine and that nearly cost me my life. The growth became life-threatening, and I ended up having to undergo surgery, in India. I also suffer from fibromyalgia, a rheumatic muscular condition which leaves me in constant pain and discomfort.

However, as a mother my pain means nothing to me if my children are well-adjusted and happy. I have and always will put them before me, and it gives me the greatest pleasure to see how full of life and resilient they are. Natasha, Raymond, and Nathan are my life’s greatest joys, and they are in good health, are doing well in school and continue to inspire so many people, both young and old.  

Eddie and I went through the most difficult times, watching our children Natasha and Nathan go through pain, particularly with the side effects of chemotherapy that came during their bone marrow transplants. We moved around with a begging bowl, I slept on the floor in general hospitals because that is what you do if you are the primary caregiver, I have had sleepless nights and medical bills piling up because of their condition while having 8 major surgeries of my own. I have been to some of the best hospitals and some which have left a lot to be desired. I have experienced the agony that a parent goes through and the stress that comes when the treatment required is way more than you can ever afford, even if you sold all your possessions. I have been in that place where all you have is hope and faith because your loved one is so ill.

Following our ordeal, Eddie and I agreed that no parent should ever have to go through what we went through, so we founded and registered The Nate Foundation, a non-profit organization that supports children with Aplastic Anemia and related conditions. We also established a subsidiary crowd-funding platform, called Raindrops, to help and assist parents with children suffering from other health conditions that are not related to Fanconi Anemia or Aplastic Anemia.

However, within The Nate Foundation, our support extends beyond fundraising for Aplastic Anemia. We provide psycho-social support to children with Aplastic Anemia and their families and/or caregivers. We also work together with medical personnel in our country to raise awareness of Fanconi Anemia within Zimbabwe and have been able to assist by sending over 6 children to India to receive bone marrow transplants. Over the years, we have assisted patients in countries such as South Africa, Kenya, Zambia, and Nigeria and approximately 20 children have been recipients of The Nate Foundation.

We have done this work with minimal donor support as our government and most people in our country have a limited financial capacity to assist. However, we are excited to announce that we recently received, in August 2021, our first ever grant of US$10,000 from the US-based Fanconi Anemia Research Fund. This huge show of support will ensure that we continue to raise awareness of Fanconi Anemia and provide support to patients, their families, medical personnel, and health facilities.

We also established a special needs preschool called Caterpillar Clubhouse, when we had difficulty in finding a preschool that would accept our son Nathan. Caterpillar Clubhouse is open to all children with various special needs and fosters inclusive learning in mainstream school. We offer a safe and developmentally appropriate environment in which our special children can learn, with a focus on making learning an enjoyable experience for them and to inculcate in them the ability to become lifelong learners. Caterpillar Clubhouse is a self-funded endeavor that charges US$25 per month, per child, and so far, 80 children have entered and left our school grounds and gone on to successfully integrate into mainstream schools with Caterpillar Clubhouse currently hosting 33 children.

Nothing ventured comes without its challenges, but we have been called to serve, and diligently we shall. In addition to continuing our current work, we want to expand by establishing an Aplastic Anemia Treatment Centre, with a bone marrow unit, a learning center for children with special needs, research facilities and a resource library. Our journey of a thousand miles began with one step.

When we count our blessings, we count our children twice. It is such an honor to have beautiful, brave, and loving children and they have taught us so much. The biggest lesson we learnt is that no matter what life throws at you, stand up and fight. There is a blessing in the storm. When we started our journey of a thousand miles, who of us knew that our story of pain and struggle would turn into a tale of beauty and service to others?

If you are interested in learning more about Sylvia or would like to get in contact with her, please reach out via her Facebook pages, The Nate Foundation or Caterpillar Clubhouse, or email her at svsanyanga@gmail.com

by Yumnah Jones

Sindiswa Mabindisa

Sindiswa Mabindisa, founder of Wretched Woman’s Diary

Sindiswa was born in the township of Tembisa, Gauteng and had a very tough upbringing that no child chooses. Her story shows us that we do not choose the situation into which we are born; it chooses us but that with the calling that God bestows upon our lives, it can take one from the slums of the Earth to the Heavens before His Eyes. He sees our beauty in the way people may not and He chooses us to do the work we are called to do, to a door no man can close.

This is Sindiswa’s story…

Their marriage was a mess; they were always fighting. Every weekend my dad was drunk, and he would hit my mom. In 1998, they eventually divorced, and mom moved out and left us with our dad. Since then my dad got involved with women that treated us badly. I remember one incident where I innocently called one of his girlfriends’ “mother”. She got so mad at me and said in a condescending tone, “andingi mamakho wena!” (I am not your mother!).

We, my elder sister (aged 7), little brother (aged 4) and I (aged 6), were then sent to Eastern Cape to live with my dad’s family but we were never made to feel like we were part of the family. We had to fend for ourselves and our little brother, from changing his nappies to doing house chores. We were children but were not treated as children, being recipients of harsh words and treatment, and this had a profound effect on me. But, instead of things getting better, things just got worse.

Back home, in Tembisa, my dad remarried eight years after my parents’ divorce. In the time that we were sent to live with our paternal family, he never supported us. My grandmother, his own mother, took him to the Maintenance Court to seek financial support. But instead of owning up to his responsibilities, he resigned from his job, just so he could evade them. Each time my grandmother took him to court, he resigned from his job. Each time. She tried numerous times, but he refused to support us.  

He then summoned us back to Tembisa to live with him and his new wife, our stepmother. We were welcomed into a living hell but this time, it was only me and my brother. Even though my dad always had a drinking problem, this new life was to escalate into me doing things I never thought in my young mind, that I would ever do.   

While we were back at home, we were forced to eat pap and tomatoes while my dad, his wife and her child would dine out at restaurants. I became the domestic worker at home. I had to cook dinner, do everyone’s laundry, include cleaning their sheets filled with semen, and every housework chore one can think of, on an empty stomach. 

As I said, my dad had a drinking problem but this time, they decided to open a shebeen (a private house selling alcohol) and they made me the “shebeen girl”. I had to sell alcohol from Friday nights until Monday mornings. This decision, of theirs, opened our doors to shady characters and soon, we would have men sleeping over at our house. Strange men, lewd men, sick men. My stepmother invited them in and refused them to leave. She said people were going to kill them, with them being so drunk, and she made space for them to sleep on the floors, alongside me. I always slept on the floors but now, I had company.

Some memories of them are vague, other memories are clear. I recall one of them touching my neck. He kissed my neck and moved his hands between my thighs and said to me that he can do anything he wants with me and he will give me money … I used to share my sleeping space with those men.

As a girl, you want the love of your father, but my dad never loved me. He made it very clear that he did not love me and sometimes, he would hit me for no reason. His words towards me were always harsh but the words that I will never forget is him saying, “Mhla nda thenga umpu uzoba ngowo kuqala umntu endizo mdubula” (The day I buy a gun, you would be the first one I’d shoot) and he always reminded me that he would shoot me once he gets himself a gun.

Finally, 2008 arrived and he got the gun but he never followed through on his threat. In a twist of fate, the year he got the gun is the year I moved out and the year he died.

In April 2008, I moved in with my mom and a few months later, when I returned from a family visit to my aunt in Katlehong, my mom fell sick. She was bedridden and in a hopeless state. I greeted her, “molweni mama” but she didn’t respond. My sister replied and said, “uMama uyagula and akakwazi ukuthetha” (Mom is sick, and she cannot talk). I looked at my mom and she was crying. I didn’t know what to say to her, but I could see she was in pain.

In that moment, I recalled the complexity of our relationship, from the sense of abandonment I felt as a child to the woman suffering before my eyes. Mom could not talk nor walk, so my sister and I used to bathe her and take care of her. Her state was saddening because she could not even tell us when she needed to use the toilet. On the 16th September 2008, I received a call in which my mom managed to muster her strength to tell me that she loves me and a day later, the 17th September 2008, she died.

I was 17 years old at the time she died and shortly after her death; I told my sister that we need to go to dad to ask for food because we had nothing to eat. I begged him for food, but he responded, “Akho kutya apha hambani!” (There’s no food here, so leave!). He was so mad at me for asking and refused. Maybe if it was my sister asking for food, he would have given her. I was so worried because my sister had a two-year-old and we were all hungry. That night he came to our house, but I then ran to his aunt’s house. He followed me to his aunt, along with my stepmother, and wanted to hit me but his aunt told him not to. He then told me, “Uba ndingafa ungezi emngcwabeni wam ngoba nawe uba ufile asoze ndize” (If I die don’t come to my funeral because when you die, I won’t go to yours).  Those were his last words to me because on the 10th November 2008, he died.

We had nowhere to go because when my mom was alive, she was renting and when she died, I asked my aunt if she could rent with us but a month later, she left to live with her biological dad and we had to make plans to move because we didn’t have money for rent. I remember so vividly the times I would knock on people’s doors to ask for a place to sleep. There were nights where I questioned the purpose of my existence.

In 2010, unbeknown to me at the time, the answer to my question was being answered. While I was on a visit in Eastern Cape, my grandmother told me about some young lady who was sick. I asked to go see her and when I got there, she was lying in her own faeces. I asked to bathe her and did that for two weeks. My cousin then asked me to come visit them in Cape Town. When I got there, her own cousin had tuberculosis (TB). I took care of her as well. I would bathe her and take her to the clinic for her checkups until she died in 2011.

In 2016, one of the grandmothers in my extended family, who was mentally ill, suffered from an epileptic fit. She was sick, vomiting and bedridden, in her own faeces. Nobody wanted to assist her, and I was told to call an ambulance. I then offered to bathe her, and this is how I started my career looking after the elderly and the disabled.  

In 2019, I established my non-profit organization called Wretched Woman’s Diary and decided to devote my time to bathing elderly people and people with different disabilities including mental limitations. I have made it my mission to identify the elderly, the frail and the chronically ill within my community and started this organization without any financial assistance or resources. I have taken it upon myself to provide home care visits and nursing care, where possible. I have personally experienced the hardships of taking care of an elderly woman on her death bed, to the extent of bathing her corpse.

Currently, I have four volunteers working for me and they are mainly responsible for dealing with the administrative aspect of Wretched Woman’s Diary which makes me solely responsible for nursing and caring for the victims of neglect. To date, the organization is caring for 10 elderly ladies, including 2 disabled children, on a daily basis.  They are vastly located in Gauteng but in some cases, my work has taken me to the Vaal, Pietermaritzburg and Mpumalanga.

As Wretched Woman’s Diary, we aim to alleviate the stigma against our senior citizens and the disabled, we aim to ensure perpetual care and assistance to the elderly, we aim to provide a safe and caring service to the elderly within their own homes and do away with social ills that are affecting our elders. The dire conditions which our elderly are faced with are disheartening; they are faced with feelings of rejection, loss and poverty and I am hoping to work in partnerships with other individuals and organizations that shares the same vision as I do because my dream is to extend my compassion and services to all provinces in South Africa, in the near future.

I am also studying towards becoming a qualified clinical psychologist with the dream of establishing care centres as far and as wide as I can go, to look after the elderly and individuals with different disabilities and limitations.

As much as I am still broken about my upbringing and have issues that I do not want to talk about, I finally found the purpose in my pain. All the years of hardship and suffering were what were needed to mould me into the person I am today. I can relate to the abandoned, to the neglected and to the rejected because I experienced abandonment, neglect and rejection. Today, I willingly go to sleep hungry, just to give someone else my plate of food, because I remember the little girl who was hungry, most days, and I would never want someone else to suffer the way I did.

If you are interested in learning more about Sindiswa or would like to get in contact with her, please reach out via her Facebook page, Wretched Woman’s Diary, or email her at sindiswamabindisa11@gmail.com