1095 Days of waiting for a Bone Marrow Donor

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Neli Mthembu
7th August 2015
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15th June 2016
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1095 Days of waiting for a Bone Marrow Donor

1095-days-of-waiting-for-a-bone-marrow-donor-featured

1095-days-of-waiting-for-a-bone-marrow-donorFor more than three years doctors and healthcare specialists have been trying to find a bone marrow donor, both locally and abroad, for a 13-year-old girl for whom a bone marrow transplant is the only cure.

It has been seven years since the world of Zyaan Makda, 13, and her family was turned upside down. The Cape Town family were on holiday in Johannesburg when Zyaan started experiencing earache. A visit to one doctor led to more doctor appointments and blood tests finally revealed that the young girl had heterozygote haemoglobinopathy – an incurable blood disorder.

The only cure is a bone marrow transplant and Zyaan has been waiting for a donor for more than three years. In the meantime, she has to rely on blood transfusions and has had 134 of them since 2004. The veins in her hands have collapsed and she had a port put in her chest in 2014. She has had her gallbladder and gallstones removed and has under-active thyroid disease, as well. She needs blood transfusions every two weeks.

Yet Zyaan remains positive and upbeat, always ready with a smile. She seems like any other pretty, normal teenager of her age. But unlike most teenagers, she is frequently absent from school for medical reasons and cannot take part in sports. Her illness has given her a maturity and wisdom beyond her years. “In a way, it has helped me become the person that I am today,” she says.

Her mother, Fameda Govender, says, “We started three years ago to search for a bone marrow donor, but there weren’t any matches in SA. Her siblings are not matches for her either. I think honestly, that we have stopped waiting for a donor and have just started living again.”

Chris Moir of the Sunflower Fund says there is a desperate need for more bone marrow donors, especially from key population groups. Currently, the South African Bone Marrow Registry (SABMR) donor profile is 71% white, 8% Asian; 6% Coloured and 5% black. Donor matches depend on tissue types – not blood types – and genetic characteristics are often more frequent in a specific race group.

The Sunflower Fund raises awareness and campaigns for both blood and bone marrow donors, due to the lack of information and general ignorance that still exists around bone marrow donation. “One of the biggest problems is the huge misconception around bone marrow stem cell transplants. People think we drill into bones, which is totally inaccurate, so there is a lot of stigma,” says Moir.

The Bone Marrow Registry (SABMR) estimates that one in 600 children will develop leukemia or a blood disorder and may need a bone marrow transplant.

Zyaan’s illness has also been hard on Fameda. Due to the unemployment of Zyaan’s father, a diesel mechanic, the family has moved in with Fameda’s father to cut down on costs. Although medical aid covers most of Zyaan’s medical expenses, there are other costs, including transport, that need to be covered.

But Fameda is grateful for the support of her family and for staff at the Red Cross Children’s Hospital, as well as those at The Sunflower Fund. She also says since Zyaan decided to live each day as if it were her last, her outlook on life changed. “She laughs more, she is happy again and she faces each new challenge that arises head-on. She started high school this year, at Spine Road High and is a straight-A student!”

She adds, “We became so consumed with finding a match for Zyaan that we started losing focus on what was really important, which was the fact that Zyaan was still with us and we needed to start appreciating each day that we had with her. It was time for us as a family, to not make the disease the focus of our family, but to make our family the focus again.”

Please note: The original was first published on the ICON site, you can read it here.