'Bubble boys' have to be protected from germs at all costs

2017-02-22 13:47
Ruben, 2, and Ruan, 6 months, Roodt. (Supplied to Netwerk24)

Ruben, 2, and Ruan, 6 months, Roodt. (Supplied to Netwerk24)

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Johannesburg - A couple in Heidelberg have to keep disinfecting their house to prevent their two sons from falling ill and dying. 

Ruben, 2, and 6-month-old Ruan Roodt both have severe combined immunodeficiency (SCID), also known as the "Bubble Boy" disease, Netwerk24 reported. The disease is named after a film of the same name about the subject.

- Health24: Severe combined immunodeficiency

Ruben and Ruan both need bone marrow transplants and the family makes weekly trips to the hospital for the boys to get antibodies. 

Their mother Katinka, 31, said she and her husband Pieter, 43, "have bad days, but then we pick ourselves up". 

Six children get diagnosed with SCID in SA every year, said Dr Sylvia van den Berg, an immunopathologist who is treating the brothers.  

She said SCID is a genetic mutation, and in this case the mother probably was the carrier. 

SCID 'mostly undiagnosed in SA'

It was only picked up in December 2016 that both boys had the disease after Ruben repeatedly developed a specific type of pneumonia. 

Van den Berg said HIV-sufferers often get the disease because they also have a weak immune system.

"If a child gets it, the warning lights should flicker."

Ruan was also tested because the mutation is genetic and "he also tested positive for this rare disease", said Katinka. 

Unlike other children, the boys can't fight simple infections such as colds. The Roodts are also not allowed to have their sons anywhere near smokers, shopping malls or animals.

Van den Berg said, for the most part, SCID is "mostly undiagnosed" in SA. Just one in a million South Africans is diagnosed annually as having the disease, while in the US it's one in 33 000. 

"The biggest problem is a lack of awareness, not only among the public, but also among doctors," she said.

Read more on:    johannesburg  |  health

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