Cape Town - Walking into 13-year-old Zyaan Makda’s room, one is met with a sense of calm and positive energy. Her smile is warm and, like a typical teenager, she appears energetic and carefree.
But Zyaan is not a typical teenager.
She suffers from compound heterozygote haemoglobinopathy and beta-thalassemia – an incurable blood disorder.
It means she often has to undergo blood transfusions to keep her alive.
Zyaan is one of thousands of South African children in need of bone marrow transplants to cure their conditions.
People who suffer from heterozygote haemoglobinopathy have two different mutations in pairs of their genes.
Thalassemia is a severe transfusion-dependent anaemia.
According to the SA Bone Marrow Registry (SABMR), one in 600 children will develop leukaemia or a blood disorder and may need a bone marrow transplant.
To help get more people on the bone-marrow registry to find matching donors for people like Zyaan, the Sunflower Fund has this month launched the National Bandana Day campaign.
The campaign helps fund over 200 tissue-typing tests to increase the number of bone marrow stem-cell donors on the registry.
The campaign, which sees colourful bandanas sold across the country to raise funds, coincides with Bone Marrow Awareness Month and Leukaemia Awareness Month, which runs from August 15 to October 15.
Despite being diagnosed seven years ago, when she was five, Zyaan still hasn’t found a matching bone marrow donor, and her health hinges on blood transfusions that she receives every two weeks.
“Both her siblings, myself and Zyaan’s father, including most of our relatives have been tested, but unfortunately none of us are a match for her… even overseas donors are not her match so she just has to continue with blood transfusions to keep her alive,” said her mother, Fameda Govender.
“Due to all the blood transfusions, her veins started collapsing and early last year she had an operation to insert a port in her chest through which she now receives her blood transfusion.”
Govender described Zyaan’s diagnosis as “overwhelming” initially, and still remembers the day the family’s world was turned upside down.
“We were on a family holiday in Joburg when Zyaan complained of an ear ache.
“We thought that the pain was related to a change in altitude and we took her to a doctor.
“He then raised concerns about Zyaan’s paleness and referred us to the Red Cross Hospital. After blood tests we received the overwhelming news about her condition.
“I remember Zyaan being so concerned about everything… that she is going to die and how are we going to handle her death as a family. It was a very depressing period,” she said.
Zyaan chose to turn her illness into triumph, scoring the 25th highest aggregate among 280 Grade 8 pupils at Spine Road High School in Mitchells Plain.
“For Zyaan, this journey has been a long and sometimes arduous one.
“Most of the time she is lethargic and can hardly lift her head, but her spirit has never gotten tired, particularly when it comes to her school work.
“She is a straight-A student in her class. She lives every day as if it were her last, and has refused to let her illness define who she is,” Govender said.
Zyaan acknowledged that living with the condition was sometimes difficult: “But it has in a way helped me become the person that I am today.”
Even though she complained about her treatment, seeing other children go through the same thing helped her develop a positive attitude. “Being around so many sick children has helped me realise that there are other people with more serious conditions than me.
“The most defining moment for me was when I met a little boy by the name of Luciano at Red Cross Hospital, who had a tumour on his face.
“From that day I realised how lucky I was to be alive and since then I told my mom that I will never complain about the treatment or the illness again.
“I don’t complain about anything, instead I have developed empathy for other people and have appreciation for life in general.”
Lauren Corlett, spokeswoman for the Sunflower Fund, said although the chances of finding a donor were slim, the fund would continue recruiting more people for the bone marrow registry in the hopes that a match could be found.
“With the odds of patients finding a match being one to every 100 000, it is imperative that The Sunflower Fund grows this database in order to offer hope for patients suffering with life-threatening blood disorders,” she said.
She urged all South Africans to buy bandanas during the next two months.
“We desperately need a sell-out year in order to pay for people’s test costs to join the bone marrow registry. In the majority of cases, a bone marrow stem cell transplant is a patient’s only hope of survival.”
Cape Argus