Tag / health

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

Suraiya Essof

Suraiya Essof, founder of Kites for Peace

Suraiya Essof was named one of the 20 Most Outstanding Zimbabwean Women by The Guardian UK in 2020. She is a tenacious woman who, in spite of her health challenges, has become very influential in bringing together communities, businesses and social networks. Her knack for networking and the ability to create opportunities has seen her social innovative work being recognised and awarded, both locally and internationally. Social entrepreneur, mother, wife and businesswoman are of the many ways in which one can describe her but most importantly, she is proof that to create change, we need to turn inwards before we can power outwards.

This is Suraiya’s story…

I was born in a small mining town, Kwekwe, in the middle of Zimbabwe to a second-generation Zimbabwean father and a South African mother; the youngest of four girls. At the age of 10, I was diagnosed with Type 1 Diabetes. It rocked my family and, in the 90s, with very little access to information, it was indeed a very confusing time. Stories that I would be blind by 30 and an amputee a few years thereafter really got me into a mindset where I felt that time was limited. Likewise, my parents were amazingly proactive; they subscribed to foreign publications of Diabetes magazines and wrote letters and ordered books, just to educate themselves, my siblings and me. Their efforts brought light to my situation and with it the hope that I was not doomed to die a painful, undignified death that had been described by well-meaning yet fearmongering people.

Still, it was difficult. Diabetes is a tight rope of managing your blood sugar levels by finger prick testing several times a day, four insulin injections daily, monitoring what you eat and in what quantities, and making sure you stay active, but also not too active. Managing stress is also a huge part of diabetic care. As a preteen and then a teen at boarding school, I had to contend with stress and anxiety levels that came with trying to negotiate studies, relationships, teen angst, boarding school, autocratic matrons, bullies and a life-threatening condition. Three months before my O level exams, I slipped into a coma due to diabetic ketoacidosis. However, I did well in my exams, but not “well enough” to qualify for a white blazer (a status in Zimbabwean schools associated with being a straight A student) and to fill the big shoes that had been left for me.

I was perceived as an underachiever and with low expectations of myself, academically; I faded into myself, but started to spark socially. Once I reached university level, I shook off the negativity that came with being bullied, was more independent and the world became my oyster.

With internet access and Google, I could get any information I wanted. I started networking, at university and online, to get information I needed for my studies and to help myself and others in various areas. I became a go-to source of information for friends and residence mates. I joined advocacy groups for various causes, co-led fundraisers and through my activism; it expanded my awareness to the plight of others.

The suffering of others can be tremendously sobering, especially when one is self-pitying and is constantly being pitied by one’s own circle. From an oblivious young person, wallowing in my own misfortunes and self-imposed limitations, I awoke to the social injustices that others faced. It seemed futile to feel guilty of my own privilege and of the opportunities and care afforded to me, so I took the initiative and added my name, voice and feet to meaningful causes.

I graduated with distinction, from the University of Johannesburg, with a Bachelor of Commerce degree in Industrial Psychology. On my return to Zimbabwe, I got my first job at a school, where I volunteered to teach a few substitute classes and fell in love with the teaching profession. A few years later, I got married to my soulmate and moved to Harare. I then pursued distance learning and graduated with a Postgraduate Certificate in Education (PGCE) from the University of South Africa while working at a Jewish school for 7 years. As a Muslim who attended Christian schools, being a teacher at the Jewish institution offered yet another perspective to my inherent belief that we are more alike than we are different.

After the completion of my PGCE, my two sons were born, and this again shifted my perspective on the meaning of life and my purpose. As my children grew and my furniture retailing business settled into a rhythm, things came more into focus for me on my path. I decided to follow my dream of uniting communities, teaching peace and spreading the message of kindness, brotherhood and compassion.

In 2014, the year that I embarked on a new journey, I also experienced the sudden loss of my amazing, dynamic mother. There are few words to describe how the death of a loved one impacts your perspective on life. Again, I was more aware of my own mortality and suddenly overwhelmed with the huge responsibility of being a parent myself. Legacy became ever more important to me. What would I leave behind for my children? Had I lived a meaningful life? Have I served others? Did I share? Was I authentic? Would I be a good example? Were the lessons I had left behind be good enough? These questions shaped how I chose to continue my journey.

In the same year, I came across an independent project on Facebook inviting participants to break the world record for the number of kites flown simultaneously. I hosted the event and forty-eight kites were flown in Zimbabwe that year as a part of this initiative. Friends and family picnicked and flew kites. The message was well received; find your joy to find your peace. The world record was broken unofficially the following year, in 2015. That same year, in Zimbabwe, there were calls from the attendees of the previous event to fly kites again; not to break a world record but to celebrate our beautiful environment and to come together in peace on International Day of Peace, 21 September. They scaled the heights of the granite rocks of Ngomokurira and flew bright kites against a stunning backdrop of blue skies and spectacular rock mountains.

With news coverage of the previous year’s festival and increasing interest, 2016 brought a new energy to Kites for Peace. I invited 25 individuals from a WhatsApp group called the Do Gooders to participate in the event. The kite festival had 1000 attendees that year and the following year, in 2017, the number of attendees doubled to 2000! While the initial event was to simply and unofficially break the world record, the subsequent events became a tool of social change.

The Kites for Peace event became a movement that sought to strengthen the ideals that lead to peace. We are committed to the United Nation’s Sustainable Development Goals (SDGs) which we believe are building blocks for peace. In this spirit, and under the Kites for Peace movement, we have engaged over 150 local community charitable organisations to create the Zimbabwe Cares Network. Starting with only 25 at our 2016 event, the Zimbabwe Cares Network is a philanthropic collective of an all-encompassing, community-based and goodwill initiative driven by a shared humanity, compassion, shared vision and a passion to help others. We believe that these organizations are integral to driving social change and use various platforms to network, collaborate and support each other. They meet annually at the Kites for Peace event and use the respective platform to fundraise and raise awareness of their causes. There are currently over 7000 members interacting on our platforms and the impact of this network is immeasurable. Membership for organisations is free and only requires proof of registration. It is coordinated by me and an enthusiastic group of volunteers and is the main project of the Kites for Peace movement.

With increasingly difficult conditions in the country and subsequent increased despair, the need for peace is ever more pressing, and thus the movement for peace has grown in impact, with more people engaging and valuing the need for mental strength, hope and resilience. The 2019 event was held in the jewelled lungs of the city at the Harare Botanical Gardens with a record number of participants and attendees, and in partnership with United Nations Development Programme Zimbabwe. Our 7th event was in 2020. It was an online event which saw more than 20 countries participating, with Kites for Peace festivals held in Tunisia, Nigeria, India, Reunion Island and Zimbabwe.

Through the Kites for Peace platforms, I continue to spread the message of peace and hope and to inspire compassion by highlighting the efforts of the organisations of the Zimbabwe Cares Network all year round. Kites for Peace is a registered organization in Zimbabwe and a registered International Day Of Peace event. It is part of Peace One Day Peace Coalition, a network of global organizations all working towards peace. It continues to grow as a movement for global peace, starting with the individual and inspiring communities to create healthy spaces for recreation and social change. Kites for Peace pledges respect for all life, rejects violence, promotes forgiveness for self and others, promotes goodwill, encourages to uplifts others and help them, to listen to understand and to preserve the planet.

I am driven by my commitment to helping others with support and upliftment through networking and education. I seek to solve the systemic challenges of finding peace in an ever-changing world where economics, politics, climate change issues and the media affects our state of mind.  By promoting inner peace and unity/ubuntu, and through community activism, I aim to change perceptions to drive social change and make us, our communities and the world more productive, purposeful and fulfilled.

I use recreation as a non-intimidating way to approach sensitive issues and to especially encourage children, who are our future policy makers, to become involved in issues that affect individuals, the communities that they live in and the world at large.

I hope that my story will encourage others to have faith in their path, trust their instincts and to truly follow their purpose, even if their purpose is ever changing and their situation is currently not ideal. I believe that no experience is ever wasted and that your path will lead you to your purpose, and ultimately to contentment, fulfilment and perhaps even happiness!

If you are interested in learning more about Suraiya or would like to get in contact with her, please reach out via the Kites for Peace website www.flykitesforpeace.com or email her at suraiya@flykitesforpeace.com