Rachel Ancer is a lucky kid. For the past three years she’s celebrated two birthdays each year – her actual birthday on 14 March and her re-birthday on 26 November.
A re-birthday is what many people – like Rachel – call the anniversary of the day their lives changed: the day they got a second chance by receiving a stem-cell and bone-marrow transplant.
Rachel is now a thriving 11-year-old who loves maths and English, dreams of being an architect or a writer and would love to own a chocolate factory to satisfy her sweet tooth.
Before her transplant she was so weak and exhausted she could barely make it through the day, but those bleak years are behind her now.
And to celebrate her re-birth, she has written a book call Rachel’s Second Chance with her dad, journalist Jonathan Ancer, and mom, psychologist Jean Luyt. The aim of the book, which tells her story from sickly child to robust pre-teen, is to raise awareness of the South African Bone Marrow Registry (SABMR) and proceeds from the book with go to the organisation.
Rachel, who is a learner at The Grove Primary in Cape Town, was five when her parents started to worry that something was seriously wrong.
“When she started Grade R, we noticed that she was very pale, she was tired and she had no appetite,” Jonathan tells us.
At first they didn’t think much of it, but when the symptoms continued they took her to their doctor, who diagnosed anaemia and also took blood samples for analysis.
“The tests showed her red blood cell count was very low,” Jonathan says. “There was something very wrong with her.”
The family were referred to the oncology unit at the Red Cross War Memorial Children’s Hospital where, many tests later, she was finally diagnosed with pure red cell aplasia (PRCA).
“It’s extremely rare,” Jonathan says. “At that point we didn’t know anyone in the country who had PRCA. We joined an online group of people from around the world and it had only 14 people. Rachel was the only child,” Jonathan says.
PRCA is a blood disorder in which the bone marrow – the spongy tissue in the centre of the bones – fails to function adequately. Red blood cells carry oxygen to the entire body so if they aren’t doing their job properly, it results in severe exhaustion and a compromised immune system.
Doctors tried various treatments but nothing worked and it became obvious Rachel would need a bone-marrow transplant. The hunt was on to find a compatible donor.
Rachel’s parents weren’t a match. Her siblings – an adopted brother and sister and an older half-brother – were tested on the off chance they were matches but no luck.
Rachel’s book reveals that only 30% of patients have compatible family members and there are currently more than 73 000 people waiting for a match on the SABMR database.
Jane Ward, the registry’s acting deputy director, says the organisation works with many countries to find possible matches, including the US, Brazil, Israel, Russia and India.
“There is a 1 in a 100 000 chance of finding a donor,” Jane says. “Donors could give someone that second chance in life – to celebrate their 18th birthday, to get married and to see their grandchild.”
The SABMR is celebrating its 30th anniversary this year, and 19 September is also World Bone Marrow Donor Day and the date of the launch of Rachel’s book.
“World Bone Marrow Day is when registries all around the world say thank you to their donors for either joining the registry or donating stem cells for a patient,” Ward says.
And no one is more thankful than Rachel and her parents. Jonathan will never forget the day they he found out a match had been found for his daughter.
“We were told someone had registered in November 2016 but they had to make certain it was a dead match before tell us in January 2017. On 14 March 2017, Rachel had her transplant.”
The process was gruelling, though. Rachel had to be in hospital for six weeks and undergo many treatments, including chemotherapy, to strip her body of bone marrow so new donated marrow and stem cells could be transplanted.
In her book, Rachel talks of always having a pack of cards with her and using games to break the ice with other kids in the ward.
“It was kinda okay [being in hospital],” she says. “My parents brought my toys because I wasn’t allowed to leave. I had lots of medication and I hated that. But the nurses were extremely kind, especially Super Sindi. She knitted me a beanie when my hair fell out.”
After the transplant she slowly but steadily started to recover. Rachel’s donor was Magdalena Lewandowska, a woman from Poland and a genetic match for the little girl.
On Rachel’s first re-birthday she wrote a letter to Magdalena via the SABMR to thank her for her second chance.
Magdalena logged onto the registry, saw the letter and contacted the Ancer family.
“Rachel and Magdalena have exchanged several letters and photos over the years,” Jonathan says. “Rachel also sends Magdalena a birthday letter each year.”
Jonathan says his family’s experience has taught him how vital being a bone-marrow donor is.
“Like many people, I always thought that I would become part of the registry but I kept delaying it,” he says. “And then Rachel got sick. I now wish I’d joined earlier because you could be someone’s second chance without actually doing very much.”
For more about becoming a donor, go to sabmr.co.za