South Africa: Marfan Syndrome gives little hope to siblings

Image copyright Getty Images Image caption The Rohan Boodhoo Trust says part of the issue with children like Covid is their rapid development On 26 March 1997, only days after the death of his…

South Africa: Marfan Syndrome gives little hope to siblings

Image copyright Getty Images Image caption The Rohan Boodhoo Trust says part of the issue with children like Covid is their rapid development

On 26 March 1997, only days after the death of his mother Maria, Covid the child was put on a transfusion waiting list.

His mother, who worked in a maternity hospital, was killed during a run-in with a gang of boys following a row at a football game in a town near Jo’burg.

Since then, Covid has suffered from a range of illnesses – TB, Hepatitis B, Tuberculosis (TB), leukaemia, diabetes and Marfan Syndrome (a connective tissue disorder), which causes an underdeveloped chest.

The last condition has left him paralysed down his left side.

A textbook diagnosis

He’s had other children, but none of them has had the same luck. Despite routine tests for TB and leukaemia, which show no sign of infection, none of his children have contracted the disease.

Now, having beaten the odds on Covid’s Marfan Syndrome diagnosis, it’s the only cancer he’s had.

When the cancer was discovered, Covid’s siblings Karen and Michael were presented with the news at an early age.

“We were about three and four, at this time,” recalls Karen. “It was a little bit scary.”

Covid’s parents always knew he was special. They believed in him from the day he was born, although his mother was in the early stages of her job when he was born.

“We knew from day one that it was something we were going to deal with,” says Karen.

Image copyright Getty Images Image caption Despite routine tests, Michael and Karen were never told about the cancer, but their father was

‘Why don’t we know?’

Michael and Karen were told to bring their children to the hospital “because there might be something”.

That eventually came to pass, but much to the family’s surprise, the cancer hadn’t run its course.

“It was as if we just got the information that our son was going to have cancer,” says Karen.

“A lot of us were quite disappointed.”

Despite being parents of the youngest child in a family of five, the remaining siblings were also kept in the dark.

“They just accepted it,” says Karen. “No one, really, has ever said ‘why don’t we know?’

“We just presumed that our children would have it as well, like everybody else.”

Image copyright Getty Images Image caption Covid is one of only two children ever diagnosed with Marfan Syndrome in South Africa

“She’s in the doghouse,” says Michael, when asked about the way his parents have responded to the situation.

When Michael’s first wife was diagnosed with cancer, he and Karen followed it very closely. They read about the pathology report and both felt it was something they needed to know.

“You should be able to check the information,” he says.

Image copyright Getty Images Image caption Covid is benefiting from a bone marrow transplant, but it has lasted longer than anticipated, his siblings have asked to be tested

In late 2016, Michael became concerned with Covid’s cancer.

He spoke to his doctor, who asked him to tell Karen the news he had been dreading.

Karen, who had accepted what she knew she had to do, had no idea what he meant. Michael had also yet to explain to her that the skin cancer was only one of two cancers on Covid’s tumour.

Unthinkable moment

A few weeks later, on 19 May 2017, Covid was rushed into theatre for the bone marrow transplant.

Karen, Michael and eight other family members – who have since been tested and are HIV negative – had their bone marrow samples transplanted into Covid.

The transplant worked, but the cancer has proved harder to combat.

Image copyright Getty Images Image caption Covid and Michael will both need their individual treatment to take place in the UK.

The 12-month campaign to find a suitable donor began after Covid was unable to be given the treatment in South Africa. The affected area of his right lung is now ‘significantly stable’.

After nearly 20 years of living with diseases that are difficult to treat in South Africa, Michael and Karen are now relieved that they have an option.

“If we had our life again, without cancer, we would probably take each year as it comes and live our lives without it,” says Michael.

Covid is scheduled to have a full bone marrow transplant on 7 April 2020.

Michael, who like Covid is HIV negative, will be tested at the same time.

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