It’s been two years since Health-e News first met Oreokame Sehularo from the Northern Cape. Two birthday celebrations later, and the 11-year-old, affectionately called “Oreo” by family and close friends, is still waiting for a life saving stem cell donation. 

Oreokame was diagnosed with Fanconi anaemia at the age of four and has lived with it for most of his life. The rare genetic disease mainly affects the bone marrow. It results in decreased production of all types of blood cells, and is the most common form of inherited aplastic anaemia.

His older sister, 27-year-old Onthatile, says the past two years have seen some of the worst days of his illness. Onthatile has been taking care of Oreokame when their mother is not around. Every day she learns more about her brother’s condition and how it affects him. 

“It’s not easy. Sometimes he gets very ill. He swells up and gets nose bleeds that can last for three minutes to more than an hour,” she says. “My mother has to take him to do a full blood count twice or three times every month when this happens. Sometimes he has to be admitted to hospital.”

This journey has been made especially painful by the loss of their father in 2021.

“The death of our dad has been especially difficult for Oreo because they were very close. They spent time doing his homework together, playing, and going to all his doctors appointments and spontaneous hospital trips. Sometimes we can’t help him with school work because he just wants our dad.”

Kealeboga, Oreokame’s mother, says she has kept the faith in a positive outcome throughout her son’s worsening condition over the past two years. Her daily prayer is for him to one day live a normal life like every other child, and not worry about getting a donor. 

“To see my child having a successful transplant and living his life to its fullest. I haven’t given up and I continue trusting in God through this process,” she says.

50% match not good enough

Oreokame’s father was a 50% match. Dr Theo Gerdener, clinical haematologist, explains that a haploidentical, also known as a half-matched donor is not uncommon.

“Parents are always a half-match for their children. Siblings (brothers or sisters) have a 50% chance of being a half-match for each other. It’s very unlikely that other family members (like cousins, aunts or uncles) would be a half-match.”

Occasionally, a 90% matched donor is used to donate stem cells. But this may lead to more complications during and after the transplant. A half-matched transplant can also be performed using parents, siblings or children as donors. But this is a different type of transplant which Gerdener explains is also associated with more complications.

“This is why a 100% match is a lot more preferable, even if the donor and recipient aren’t related to one another.”

Race and ethnicity

When it comes to finding a donor, Gerdner clarifies that race and ethnicity are social and cultural constructs and play no role in the choice of a stem cell donor. A black recipient may receive stem cells from any ethnic group as long as they are genetically matched.

Race refers to the concept of dividing people into groups on the basis of various sets of physical characteristics and the process of ascribing social meaning to those groups. Ethnicity describes the culture of people in a given geographic region, including their language, heritage, religion and customs.

Gerdener adds that a patient’s ethnic background is important in predicting the likelihood of finding a match. This is because human leukocyte antigen (HLA) markers used in matching donors are inherited. Some ethnic groups have more complex tissue types than others. So a person’s best chance of finding a donor may be with someone of the same ethnic background. HLAs are genes that play a significant role in disease and immune defence.

“A genetically matched donor is required. And as race and ethnicity are broadly influenced by a person’s genetic makeup, it makes sense that a genetically matched donor is more likely to be found when searching among donors who have shared a common ancestry with the recipient,” says Gerdener.

Registrations not resulting in donors

Palesa Mokomele is head of communications at DKMS Africa, a stem cell donor recruitment non-profit organisation. She says there’s been an increase in the number of Black people registering to become donors over the past two years. 

“Last year in particular, we went from 15% registrations from Black, Coloured, and Asian groups to 50%. Black African people now account for 27% of these registrations. Most registrations are coming from universities, which is a great thing because it means the youth are becoming more informed and aware.”

However, there is a lagging gap between this increase and the number of people who are actually available to donate when the time comes. This has particularly been the case with Black donors, Mokomele says. 

“When we call the person who has registered to tell them that they are a match, a lot of people don’t turn up for that. Some of our patients will have four donors and none of them will be available to go through with the transplant. Donor availability is a growing problem across donor registries.” 

Keeping up hope

Oreokame is turning 12 in September. His family is hoping for more progress in the search for a suitable donor.  Oreokame’s mother says his condition is deteriorating. 

“If he can find a match, they will only need the cells that work in the bone marrow. They will plant it in him in order for his body to multiply or produce his own blood. That way he won’t need to rely on blood transfusions,” she says. – Health-e News