Ruben and Ruan: Brothers with rare SCID disease
It is a disease that only one in a million people are born with.
RUBEN Roodt (2) and his little brother Ruan (six months old) suffer from a very rare disease called SCID (severe combined immunodeficiency) or “bubble boy” disease.
The RECORD visited the boy’s parents, Pieter and Katinka, at the Netcare Union Hospital, where the little ones are treated. “We want to create more awareness about this disease because it is a very difficult issue to deal with,” they said.
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SCID disease is caused when two dormant chromosomes meet and cause a genetic defect. The defect is extremely rare and internal. In Ruan and Ruben’s case, they have no immune systems. In other words, the genetic defect caused them to be born without any system to fight invading bacteria, which means that a common cold or fever can be fatal for them. What’s more, they have no tonsils and Ruan was born with his intestines outside his body, which was, to say the least, very disturbing and traumatic for his parents.
The boys are the only brothers in South Africa who both suffer from SCID – it is a disease that only one in a million people are born with. They have become dangerously ill numerous times from the smallest of infections.
“I would watch them all night to see if their breathing was normal,” says Pieter. “We’re always tuned in to them. We have to be.”
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They are never safe unless they are kept in a small, sanitised “safe space”, away from any sort of bacteria that could reach them, hence the name “bubble boy” disease. They need to be on a drip of human antibodies every week, especially if they are to receive the bone marrow transplants required to relieve their condition.
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Ruben and Ruan are lucky that their conditions can be fixed – as this is not always possible for SCID sufferers. However, they need marrow donors that are not related to them but have DNA that is near-identical to theirs. This means that finding the right bone marrow for each boy has been a harrowing task and cost millions. “They are our lives, we have no social lives” says Katinka, smiling. “For us it’s either work, house or hospital. Thank goodness I have my husband. Some days I just want to break down and cry, but then he picks me up again.”
To raise funds to pay for their sons’ bone marrow transplants, Pieter and Katinka have arranged the Murgpyp Fees at Hoërskool John Vorster, Nigel to be held on March 4. Entrance fees are R100 per adult and R50 per child, with children under six years entering for free. Visitors can look forward to various local music artists, food stalls, monster trucks, chopper rides and more. Please support little Ruben and Ruan. Bring the whole family for a Murgpyp Fees fun day! If you would like to book a stall or make a donation to the Roodt family, contact Pieter 078 588 8475, Katinka 073 901 7050 or visit www.babymarrow.org.
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