The New Beginnings of a Silenced Soul: Nonverbal, but Alive Inside
by Kirsten Steenkamp
16 April is an unusual celebration, it is World Day of Voice. Before you read on, try to reflect on the last time you were grateful for your voice. Have you ever, honestly, thought about its enormous role in your life? Like most of us, we take for granted that our voice gives us direct access to communicating with those around us. We speak and can be heard, instantly.
This unique awareness day is a call from voice professionals around the globe – from speech therapists and surgeons, to vocal coaches and performers – to bring attention to the importance of the human voice. Today, we ask you to delve into the world of Kudzai Marozwa, a young gentleman who has been deprived of the opportunity to share his voice with the world. The story of his parents, Joe and Ellen, introduces how we came to know and love the boy with an unstoppable will to live.
In 1991, Joe and Ellen met for the first time. While working for the same primary school in Zimbabwe, these two Shona teachers connected. And despite being much younger, Ellen fell in love with Joe, a wonderful man who was drawn to her enthusiasm for life and deep compassion for others. Some years later, Joe asked for Ellen’s hand in marriage – offering lobola to her family and the chance to fulfil her dream of one day having a perfect family of her own.
In the Shona culture, the social significance of conception after marriage is dutifully understood. However, trying their best to fall pregnant, Ellen was unsuccessful. Thankfully, in 2004, Ellen’s time had come. As a woman, she was hoping for a girl, and Joe, a soccer coach at the time, dreamed of having a boy. After a healthy pregnancy with no complications, on the 19th April, labour was induced. After 9 exhausting hours of pain and praying, a boy was delivered! But, he was not breathing…
It took the doctors some 20 minutes to resuscitate him, but thankfully, he survived. Relieved and ecstatic to see a bouncing happy boy, the couple recall the moment of seeing their handsome son with hands waving and eyes wide open! Their hearts melted and it was decided he would be named Kudzai – meaning ‘respect’ in Shona. After being sent to a larger hospital for monitoring, Kudzai was placed in an incubator and Ellen went to sleep, relieved that Kudzai was alive and all would be well. Nothing could have prepared Ellen for what she saw the next morning.
Kudzai’s eyes were closed, hands in a fist, toes curled and body twitching, he was having a seizure. “The nurses couldn’t explain what was happening. It was horrific.” For 8 days he remained in the same state, with no idea what caused it and no comfort from doctors that it would improve. Miraculously, Kudzai came back on the 9th day. The couple and their new bundle of joy were discharged that day, with little understanding that it was only the beginning of a long, tough journey.
Despite the fact that it did not appear that anything was wrong, Kudzai’s growth was slower than others and his milestones were beginning to fall behind. Deciding to consult a doctor to find out what could be the matter, Kudzai was referred to a Children’s Rehabilitation Centre. The couple were told that in addition to the epilepsy, Kudzai had cerebral palsy and he might never walk or talk.
Caused by a reduced blood or oxygen supply to the brain during early development, cerebral palsy affects movement, muscle tone or posture. As the only bodily tissue that moves other parts of the body, impairment to the muscular system creates havoc in the body. Symptoms can be extensive, impacting breathing, digestion, speaking, walking and temperature regulation. While prognosis differs dramatically for each individual, depending on the severity and timing of brain trauma, there is no effective treatment.
For Kudzai, his first months of life were met with constant hospital visits, usually for respiratory-related ailments, such as pneumonia. Extended family suggested the couple meet with healers and prophets to seek remedy or answers, but these visits were unsuccessful. Giving any possible solution a chance, Joe and Ellen remained hopeful despite the slow improvement. Within a couple of years, it was decided that physiotherapy would become the focus.
Meeting other parents at physiotherapy who were coming from very disadvantaged backgrounds gave Ellen the strength and courage to deal with whatever was coming. Thinking back on how other parents struggled too, Ellen remembers that some parents would walk several kilometres to bring their child to therapy sessions.
However committed Joe and Ellen to seeking intervention, the lack of progress became discouraging. Doctors were at a loss for why Kudzai’s infections returned so frequently, never properly relieving the family of time out of the hospital. Prophets and healers told the family that Kudzai would die soon…
One terrible night while Joe was out of town, Kudzai started vomiting – and didn’t stop. All the blankets had been spoiled, and clothes too, and still, it went on the entire night. At some point, Ellen began to pray, asking God why he has given Kudzai to her if this was all going to hurt so much – if Kudzai was going to be in such pain all the time. “If he did not belong to me, I told God to please take him.”
But Ellen declared, “Miracles do happen.” Kudzai recovered from this night and life went on as usual: physiotherapy and the never-ending traditional home remedies. Holding onto the hope that their admirable son who had already endured so much in his life would somehow improve, Kudzai could still not talk, turn, sit, smile or even open his hands.
With worsening political instability in Zimbabwe, the family relocated to South Africa in 2009. In their first year of arrival, Kudzai was seen by receptive therapists at the Grabouw Clinic and received his first buggy wheelchair! With Ellen by his side as an assistant teacher, Kudzai also started creche. A couple of years later, Kudzai started working through a picture play programme, and at 6 years old, Kudzai started pre-Grade R at Eros School in Cape Town.
Eros is a school well equipped to support the learning and developmental needs of kids with cerebral palsy. In addition to the teachers and facilitators, they have an on-site CP doctor, a physio, occupational therapist and housemothers who look after the weekly boarders – including Kudzai. Classes have no more than 12 kids and sufficiently allow for teachers to cater their teaching to each child’s individual education plan (IEP).
Joe says that in 2011 when Kudzai started at Eros, he was doing very well in most of his subjects. At home, he was able to jump off the bed and climb back up several times a day. It seemed at this point that there was still great hope that one day he would walk. But as the years passed, fears surrounding his ability to continue school grew. Not only was Kudzai still unable to speak, his condition was beginning to deteriorate.
Joe and Ellen were confused about his uncontrollable spasms and were becoming desperate to find an answer. During these spasm attacks – some that would last hours on end – Kudzai was responsive. He was totally aware of his surroundings and could, in his own way, communicate his pain levels and discomfort. This indicated that he was not experiencing fits and therefore, this was not his epilepsy acting up. Disappointingly, on each admission to the E.R., doctors could only attribute these seizure-like states to his epilepsy, but his parents could not believe this.
Doctors were doing their rounds one day and found Ellen trying to feed Kudzai. Noticing that there was a huge problem, the doctors opened and began to read through his Red Cross file – Kudzai’s third volume. With the full attention of the entire group of doctors and interns that day, Ellen was adamant and finally able to make herself understood. Doctors agreed that it was not epilepsy.
In 2014, Kudzai was officially diagnosed with dystonia, a rare neurological movement disorder which explained his uncontrollable spasms. Dystonia affects Kudzai’s entire body, meaning that throughout each day, he can experience involuntary shaking, tremors and uncomfortable twisting into sometimes painful postures and unnatural positions. Dystonia has no treatment outcomes and for Kudzai, is severely progressive.
Among other body parts, Kudzai’s vocal chords and larynx are severely affected. This resolves the mystery of increasingly urgent health concerns that have, until now, been unexplainable with his CP and epilepsy diagnosis. Kudzai experienced limited vocal communication, a decreasing ability to eat and swallow whole foods, as well as increasingly restricted breathing.
Remaining committed to giving Kudzai the best experience of life, Joe and Ellen continued searching for activities or hobbies which Kudzai could participate in, besides his schooling. Stumbling upon The Chaeli Campaign on Facebook one day, Ellen reached out and was amazed at what she would find. Without her knowing, this relationship would mark their entry into a community and ultimately, a family.
Some years prior, the Chaeli Sports and Recreation Club (CSRC) was founded. Aiming to address the enormous gap in recreational sporting opportunities for individuals with disabilities in South Africa, the CSRC pioneered adaptive cycling, running, as well as wheelchair dancing at the Bergvliet Sports Association. The CSRC works with various organisations to fight for the inclusion of adaptive athletes in events across South Africa, opening a pathway for disabled people to enjoy a more active and adventurous lifestyle!
Since being introduced to the CSRC, Kudzai has become involved in every program and he has loved the opportunities to get more out of life. Taking part in wheelchair dancing demos and competitions over the years, Kudzai is blessed with a beautiful relationship with Ellen – his mom and talented dance partner. He says that he likes having her as a dance partner because she makes him feel safe. Sports programs have also enabled Kudzai to experience the breathtaking sights of the Cape Peninsula during his Cape Town Cycle Tours as a buggy rider.
Amazingly, doctors did not believe that Kudzai could sit for so long, but he proved them wrong. Even more interesting is that Kudzai does not get spasms during his racing and dancing, offering welcomed relief during a period in which he can totally be present and enjoy himself! Making new friends, learning to work as part of a team and socialising regularly, Kudzai refuses to let his disability dictate what he can and cannot do.
Sports has helped Kudzai in many aspects of his life – emotionally, physically, socially, mentally and overall improved health. With the happiness that sport brings to his life, Kudzai’s confidence has also been lifted tremendously over time. But, Kudzai is as competitive as he is compassionate! Before the night of a race, Kudzai hardly sleeps. He gets so excited that he wakes up throughout the night, asking his parents whether it is time to wake up and prepare.
In 2017, Kudzai landed in hospital several times due to various infections. Reflux and the dystonia was impacting the muscles involved with his digestive system, meaning that Kudzai’s aspiration was worsening. Occurring when food, liquid or even saliva is breathed into the airways and lodges in the lungs, pulmonary aspiration is dangerous. Due to the chronic lung damage that has taken place through the years of chest infections and pneumonia, Kudzai has sustained aspiration pneumonia. A drastic, but life-saving, decision was made.
Medical experts advised that Kudzai undergo gastrosurgery, allowing for a low-profile mic-key to be implanted for tube feeding. The family admits that it was difficult to accept that he would be eating through his tummy, but the assistive device bypasses most of his eating complications. Being able to receive sufficient nutrients and calories quickly normalised his weight, significantly improved his health and soon relieved most of his chronic infections.
Around 2018, a motorised wheelchair became available to Kudzai through The Chaeli Campaign. However, given his struggle to control movement and co-ordination, many did not think this was a good idea. Chaeli Mycroft, a fellow dancer for many years, was adamant in questioning whose right it was to deny Kudzai the gift of independent movement. A wheelchair user herself, Chaeli understands the freedom and heightened sense of self that accompanies the transition to a motorised chair.
Kudzai gave it a try, but unfortunately his motor impairments caused a lot of trouble at first. Bumping into people, driving into other dancers, and even riding into (and breaking) a glass door by accident, it took 8 dance practice sessions before Kudzai was able to attend a lesson without major incidents. But, he is determined to get things right and doesn’t easily give up. He is now dancing with Ellen in his motorised chair and looking forward to dancing practice every Sunday.
Despite Kudzai’s will to be understood by those around him, communication and education have been an unimaginable obstacle. At school, teachers are challenged to evaluate Kudzai’s progress and adequately adjust his learning outcomes. The ongoing struggle with using a laptop – sometimes requiring minutes to type a word or simple sentence – resulted in major frustration and eventually, active avoidance.
At some point during 2020, Kudzai qualified to trial and train to use the Eye Gaze communication device. Through employing advanced technology software, the Eye Gaze enables a user with restricted hand function to control a computer using their eye movement! Eye tracking produces text and generates speech, giving Kudzai direct access to express his thoughts, feelings and desires. After considerable fundraising, Kudzai received his very own device! And in just a few months, this eye-driven communication system has opened a new world for Kudzai.
Through his Eye Gaze and laptop set-up, Kudzai can now complete school work, watch movies, listen to music on his own, text his friends, play games, communicate that something is wrong, respond to others, greet his parents and brother, and even write his own stories!
The moment in which Ellen recalls hearing Kudzai speak for the first time, he answered her question with the words “Yes mom”. This melted her heart, as she thinks back on how she never expected to hear him speak.
This special family takes each day as it comes, knowing that tomorrow is never guaranteed – not for any of us. Even though each day that is granted is accepted as a gift, the family lives in full commitment to Kudzai’s education, sporting opportunities, recreational fun, and enjoying a lot of music and movies! Kudzai, Joe and Ellen do their best every day to keep smiling and remain positive.
While Ellen accompanies Kudzai as his dance partner every week, Joe uses his passion for teaching to facilitate a youth entrepreneurship program in Cape Town. Representing The Chaeli Campaign to upskill young ambassadors in the community, Joe hosts sessions that aim to educate our young people to become active citizens, leaders and everyday heroes. The program shows that no matter their circumstances, all kids hold untapped, intrinsic power to affect change in their surroundings.
Ellen shares that many kids with disabilities, at the age of 7 or 8, begin to realise what they can’t do. Often comparing their circumstances to non-disabled kids, they can begin to lose motivation, focus on their limitations and feel despondent about their disability.
At 16 years old, Kudzai expresses the joy of having his thoughts being spoken, heard and understood. The Eye Gaze has given him a much-needed morale booster, inspiring new hope to keep going and keep his mind working. Through the sheer force of his personality, and now, with the help of his Eye Gaze, Kudzai shows the world that he refuses to be silenced.
On World Voice Day, Kudzai’s story is publicly heard for the first time. By sharing his unwavering resilience to be heard and understood in the face of the immense physical challenges, we urge each of you to bring a deeper sense of compassion to those who you may encounter – disabled or not.
By giving voice to the deep, dark struggles of one kind and extremely special boy, we acknowledge that each life has purpose. Reminding ourselves that every story is undeniably important and unique, Kudzai illuminates a compelling message we tend to forget during the busyness of living: as long as we are alive, there is hope.