Cape Town - 140805 - 13-year-old Agcobile Kosani from the Eastern Cape was afraid at first when she found out that she had to have a heart transplant but soon realised it would make her better. Agcobile's heart muscle is damaged and is not functioning properly and she requires a heart transplant. Speaking from a hospital bed at Netcare Christiaan Barnard Memorial Hospital, Agcobile and her mother Nomawethu Kosani explained what they have been through up to this point of while waiting for a donor heart. Photo: Matthew Jordaan

Cape Town - Just over three years ago Agcobile Kosana, 13, was a budding competitive swimmer, and a netball and hockey player at her school in East London.

But one day she came back from school tired, out of breath and with swollen legs.

Her mother, Nomawethu Kosana recalls how unperturbed the family was when they took Agcobile, then 11, to be checked by a doctor. But they were to receive news that would change their lives forever: the doctors told them their daughter’s heart was failing and she needed to be admitted in hospital immediately.

She was later diagnosed with cardiomyopathy - a weakening of the heart muscle, characterised by breathlessness, swelling of legs, irregular heartbeat and potential sudden cardiac death.

“The news was so disturbing for all of us. Nobody in our family ever had heart problems, so even when she fell ill it never crossed our minds that she would be diagnosed with a heart condition,” recalled her mother.

Since her diagnosis Agcobile a Grade 7 pupil at Crewe Primary, has been in and out of hospital as her heart function slowly regressed.

But three weeks ago, with 15 percent heart function left, she was put on the transplant list. She has given up school for now and is in Cape Town awaiting a donor heart.

As soon as one becomes available she will have surgery at Netcare Christiaan Barnard Memorial Hospital.

According to the Organ Donor Foundation about 4 300 children and adults are awaiting life-saving transplants, including hearts, kidneys, livers and corneas. Foundation head Samantha Volschenk anticipated that these numbers might become “pandemic in the not-so- distant future”.

There are only two donors per million people a year. This number is a far cry from that in Spain, which has 40 donors per million people, while other European countries with the same number of people as South Africa have a ratio of 20 to a million.

Volschenk warned that the problem of scanty donation numbers was exacerbated by many South Africans’ poor lifestyles, which often resulted in an increase in diabetes and hypertension - the key drivers of kidney disease and eventually kidney failure.

At least one in 10 people will be affected by chronic kidney failure.

As August is known as Organ Donor Month the foundation is using the awareness month to launch its “Say Yes campaign”.

The campaign is aimed at encouraging South Africans to sign up as organ donors. It also appeals to medical professionals to say yes to organ referrals. Many potential donors are lost in intensive care units and trauma units as doctors fail to transfer brain-dead patients to transplant centres.

Volschenk called on South Africans to register for organ donation and alert their families as family members still had to give consent at the end.

Dr Willie Koen, the head of the transplant programme at Christiaan Barnard Memorial Hospital, said

: “We can only do a heart transplants on a child if we get a donor organ from another child. We find cardiac transplant even trickier because of the general shortage of young donors.

“Most parents find it difficult to donate their children’s organs because of the emotions attached to young children. But we need everyone to come on board and become a donor because children need these life-saving organs, too.”

Register as an organ donor at or call 0800 22 66 11 toll-free.

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Cape Argus