Hope of a ‘new normal’ for Rachel

Rachel Ancer before her surgery.

Like most little girls, Rachel Ancer, 8, is very inquisitive and has a big imagination.

She loves fairies and princesses and, like her dad, award-winning journalist Jonathan Ancer, she loves reading; when she’s big, she plans to look after horses during the day and be an artist at night.

For the past two years, Jonathan and his wife, Jean, who live in Newlands, have been fighting to save their daughter’s life after discovering she has pure red cell aplasia, an extremely rare bone-marrow-failure condition.

It meant Rachel’s body was not making red blood cells, which meant oxygen was not getting to the cells in her body, causing her heart to pound as it worked overtime.

Jonathan, who recently published his book, SPY Uncovering Craig Williamson, posted his family’s story on his Facebook page on Sunday March 5 saying Rachel had been admitted to Groote Schuur Hospital (GSH) to prepare for her bone-marrow transplant.

He said it was a miracle she had found a match after almost a year’s search for a donor.

“It was a long process that led to discovering Rachel had a bone-marrow-failure condition. Rachel has always been pale and would often be very tired. Blood tests revealed that her red-blood-cell count was abnormally low, and that sparked a series of further blood tests and bone-marrow biopsies to figure out what was going on.

“Red Cross Children’s War Memorial Hospital, in Rondebosch, took on Rachel’s case, and they consulted with experts all over the world. “Rachel did not respond well to a course of prednisone, and the only treatment available was blood transfusions. The intervals between transfusions became shorter and shorter,” said Jonathan.

Rachel became dependent on the transfusions and needed a bone-marrow transplant, so the search for the donor was launched.

The chance of finding a donor match was just one in 100 000, and none of the 70 000 people on the South African Bone Marrow Registry proved to be a match, so the search was extended to international databases. In December, someone joined the German registry who was a 10/10 match with Rachel, and a transplant was scheduled.

“I felt relieved but also incredibly nervous – a transplant has many risks associated with it. Rachel had a week of chemotherapy before the transplant.

“Now she is still in the isolation ward at Groote Schuur Hospital’s transplant unit, and when she is discharged, she will be in isolation at home for three to four months,” said Jonathan.

“She has very limited mobility because she’s attached to all sorts of tubes, pipes, ports and machines. It has taken a lot out of her, and she gets tired very quickly.

“A transplant is not a ‘quick fix’ – it’s a journey, and it will take her about a year to recover to what bone marrow transplant patients refer to as their ‘new normal’.”

There are many people in South Africa and all over the world who don’t find matches, and Jonathan encourages people who meet the requirements to consider joining the South African Bone Marrow Registry.

“To become a donor just involves giving a bit of your blood and filling out a form. It’s painless. And you could save someone’s life.”

For more information, visit the Sunflower Fund: sunflowerfund.