Lockdown leukemia threat

Rachel Luyt on Saturday March 14, the third anniversary of her transplant.

The Covid-19 lockdown is threatening efforts to recruit donors to help people who suffer from leukaemia and other blood disorders.

The Sunflower Fund is a non-profit based in Plumstead that fights these illnesses by recruiting donors who are tested to see if they are a match for patients needing potentially life-saving stem-cell transplants. But the organisation says lockdown is making its job very tough.

Every 35 seconds someone somewhere in the world is diagnosed with blood cancer.

The Sunflower Fund has postponed all planned drives and events for the registration of new blood stem cell donors as well as fund-raisers scheduled to take place up until the end of May.

This includes all drives on behalf of patients as well as drives at schools, universities, companies and sports clubs.

The chance of finding a matching donor is 1 in 100 000 – and as ethnic origin plays a significant role in the search for a donor, South Africa’s rainbow nation is at a distinct disadvantage, requiring a large pool of prospective donors.

Jonathan Ancer’s 11-year-old daughter, Rachel Luyt, had a bone marrow transplant three years ago and he says The Sunflower Fund and the transplant helped save his child’s life.

The family first discovered Rachel had pure red cell aplasia, when she was 5. The rare blood disease is caused by bone marrow not making enough red blood
cells.

“She was always very pale, her skin would go almost see-through. She was always tired and wouldn’t eat,” said Mr Ancer.

After hearing the diagnosis Mr Ancer and his wife, Jean Luyt, turned to the internet to find out more about the illness.

“Obviously the first thing we did was google it and we came across this group on Facebook.

“There were only 14 of them on the group from all over the world and they were all adults, Rachel was the only child. That’s how rare it is.”

After being diagnosed, Rachel went through a process of getting red blood cell transfusions in 2015.

“As soon as she got them, she would be a different child. She would ride a bicycle, she had red cheeks and lips, she would be so energeric.”

At first, the transfusions happened once a month, but with Rachel’s body getting bigger, she needed more frequent transfusions and the doctors became concerned that she would become transfusion dependent so they advised that she get a transplant.

In 2016, Mr Ancer said, there were around 70 000 stem cell donors in South Africa. Not one was a match for Rachel.

Her parents also tried to donate, but they weren’t matches as they only had 50% of Rachel’s DNA. Rachel’s two adopted siblings also could not be a match.

Mr Ancer said siblings coming from both parents were usually the best matches because they had the same DNA.

“A year later what happened was a miracle,” Mr Ancer said. “They (The Sunflower Fund) found someone who had just joined the registry in Poland and she turned out to be a match.

“On March 14 2017, Rachel received a bone marrow transplant at 8 years old.”

Rachel had to first go through chemotherapy to destroy her faulty bone marrow and her white blood cells to stop her body rejecting the new bone marrow. For the operation, Rachel had to go into a very secure and sterile unit at Groote Schuur Hospital so that she could not contract any infection as she had not white blood cells.

Her parents had to change out of their clothes and take other precautions if they wanted to visit her.

“We had things covering our hair and our shoes, we had to wash our hands and sanitise so that while she’s in that bubble there’s no chance of infection,” Mr Ancer said.

“I’d say she’s been through her own little quarantine before,” he joked.

After six weeks in the transplant unit, it took six months for the bone marrow to start functioning properly and for the body to start producing red and white blood cells.

“It’s three years later, and she’s doing very well. I’m grateful for the woman who gave Rachel the gift of life and hope,” Mr Ancer said.

“I’d always intended to become a donor. I thought I’ll do it, I’ll do it , but I never came to it and when my daughter needed it, I realised how important it is. You could hold the future of somebody else in your hand.

“When Rachel was vulnerable, we were so careful about being hygienic, and this is what the world is feeling like now. People can kind of get a sense of children who have leukaemia, this is their everyday reality because they are vulnerable to infections. I can’t even imagine now because they have to be double careful with the virus.”

Rachel still goes to regular appointments. However, at her last one at the end of January, her doctor said that he did not need to test her blood levels as he could see that she was okay. She had colour in her cheeks.

“For the first time she had gone to a doctor’s appointment all these years they didn’t do blood tests. I’d say that was a milestone,” Mr Ancer said.

If you want to become a donor or encourage others to do so, call 0800 12 10 82 or WhatsApp 074 7150 212. The Sunflower Fund has the option of telephonic registration.

Sunflower Fund CEO Alan James said any adult between the ages of 18 and 45 years and in general good health could still register.

“You also need to weigh more than 50kg and have a BMI (body mass index) of less than 40,” she added.

“Patients with blood cancers and other blood disorders such as aplastic anaemia, thalassaemia and sickle cell disease, to name but a few, are particularly vulnerable during times of pandemics,” she said. “Their already compromised immune systems put them at constant risk of infection under normal circumstances, and you might be the life-saving hope they are waiting on.”

To find out more about blood stem cell donation, visit www.sunflowerfund.org