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Stem cell donors: Joy for one family, agony for the other

Stem cell donors: Joy for one family, agony for another
Baby Karien, who was diagnosed with SCID (Severe Combined Immuno-Deficiency) at seven months, underwent a successful stem cell transplant earlier this year. (Photo: Supplied)
Written by Lilita Gcwabe

 

Over one year since the Mtengwane and Swanepoel families called on South Africans to register to become stem cell donors, only one of the two families had their prayers answered. The other family is still clinging to hope.

Bomikazi Mtengwane has been looking for a donor for her husband for over a year. He was diagnosed with T-Cell Acute Lymphoblastic Leukaemia in 2017, a type of cancer involving the bone marrow where blood cells form.

Black donors remain low

Finding a donor for her husband, Unathi, has been a strenuous journey with little moments of hope. This is because the number of black people registering remains low.

Xolani Hlongwane, Donor Recruitment Manager at DKMS, confirmed that the number of registered black donors is low. However, the number of people being diagnosed with blood diseases and cancer is rising. 

Bomikazi was able to return home to his wife and children when he was discharged from the hospital in August this year, after almost a year since he was hospitalised. DKMS has been working tirelessly, trying to help them find a donor. However, for a donor to be able to give their stem cells, they have to be 100% match which is a very rare occurrence. 

Agonising journey

“It is draining us financially. We live in the North West, and my husband has to be treated in Gauteng, so we regularly travel between the two provinces. It also takes a toll on us emotionally because one moment, the children are happy that daddy is home and the next, he is back in the hospital,” said Bomikazi.

Bomikazi said that making sure her husband receives treatment is financially demanding. Sometimes, Unathi has to undergo treatment daily. Their children, aged seven, 10, and 16, are taking emotional and mental strain, watching their father’s difficult health journey. 

Severe financial strain

According to Mtengwane, her husband’s autoimmune disease means he has to eat healthy food and drink certain liquids. She said that she usually could not afford to buy all the food he needed, adding to the financial strain.

“All our friends, parents and sisters are in the Eastern Cape. I have to juggle work, the children, and being able to take care of him. Every day, I wish I could have someone to hold my hand through this pain and remind me that everything will be okay,” said Bomikazi.

She added that she has to live without any family support.

“I am all alone. Sometimes I feel that we all need counselling to talk about how we feel and how to support each other through this,” said Bomikazi.

Tears streamed as she shared her story. Bomikazi said that her family keeps her going by holding on to the hope that her husband will find a donor.

An increasing number of black candidates

According to The South African Bone Marrow Registry (SABMR), only 2.8% of black leukaemia patients referred for a stem cell transplant are lucky enough to find an unrelated donor.

“The problems of beliefs and myths within the community will never disappear. What we need to do is educate people more. The more people we educate, and the more awareness we create, the more we will get people to accept and have a better understanding,” said Hlongwane.

He stressed that a patient’s chances of finding a match rest largely on their ethnic group. This means the more black patients they see, the more they need to recruit black donors.

The chances of having a fully matched sibling donor are only 25% for every patient. However, patients of European ancestry are likely to increase the likelihood of finding a match by 80% and upwards. However, this is not the case for patients of African or mixed-race ancestry. For them, donors are said to be found in less than 20% of cases.

“The numbers of black stem cell donors are currently just too low. This means that recruiting, educating, and creating awareness among African people about becoming a stem cell donor continues to be extremely important,” said Hlongwane.

Baby Karien one of the lucky ones 

Baby Karien Swanepoel was only seven months old when she desperately needed a life-saving blood stem cell transplant. After the combined efforts of DKMS, her parents, and other people’s support, baby Karien received a matching donor and had a successful transplant in February this year. 

“We had about 2000 people that joined DKMS for this single case, and we were told that this is the biggest influx of people that joined for a cause. Unfortunately, we couldn’t find a donor from SA, but we found one overseas,” said Karien’s mother, Natasja Swanepoel.

Although the experience was daunting, the Swanepoel family feels blessed to have found a donor. 

“We were so afraid of the unknown because people can change their minds even when you find a match. We had a couple of donors that were suitable, but something kept happening. The first transplant was on the 21st of November and then the second in February,” said Natasja.

A whole new world

Karien was diagnosed with SCID (Severe Combined Immuno-Deficiency), also known as “bubble baby syndrome”. SCID is a group of rare disorders caused by mutations in different genes involved in the development and function of infection-fighting immune cells. 

Karien is growing and happily learning every bit of her new world. 

“She is exploring different foods, and we have discovered that she is not a fan of sweet foods. Seeing her enjoy dried mango was great for us, so we stocked up on fruit. We are excited about her future.”

Health-e News Service has since connected the Mtengwane family with the South African Depression and Anxiety Group, which has helped provide mental and emotional support for them during this time. 

Save a life; register to become a donor here. – Health-e News

About the author

Lilita Gcwabe

Lilita is a multimedia journalist with an interest in rural advancement in the health and agricultural sectors. She’s committed to reporting on social justice, and early childhood development. Lilita believe in the power of representation, as an essential means of rewriting our stories.

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