Isabella Ballantyne was born with a rare genetic disorder called Shwachman diamond syndrome (SDS). At the age of four, she was diagnosed with acute myeloid leukemia and has been in desperate need of a bone marrow transplant.
Ballantyne’s parents, Beth and James, are both registered bone marrow donors, along with her fraternal twin sister Timika but unfortunately none of them are a match for Ballantyne.
“As far as we are aware she is the only person in SA with this disorder.
“Isabella started occupational and physiotherapy at a very young age, followed by speech therapy later for many years. When she was diagnosed with SDS we read up on the condition.
“We were worried that she would never learn to ride a bicycle or to speak. With perseverance and determined encouragement from her family, she reached these and many other milestones,” Beth said.
The genetic disorder SDS has many signs that include a compromised immune system due to malfunctioning bone marrow, a pancreatic insufficiency, requiring digestive enzymes and general developmental delay.
Despite living with leukemia and SDS, Ballantyne has managed to live a full and meaningful life. She registered for an early childhood development course and has volunteered at two preschools in Richmond for three days a week.
Unfortunately, exposure to the children meant that Ballantyne easily picked up many of the infections that were going around at school.
“I really miss the children at school. I miss having physical contact and being able to hug them. I can’t wait to go back to see my babies,” she said.
“This has been very upsetting for her as she loves and misses the children and her colleagues. They message her often and send her videos of what the children are doing.
“Unfortunately, Isabella cannot be with large groups of people and therefore can’t go to shops, restaurants, social gatherings or even church. This is very isolating and lonely. If anyone visits her at our house, they need to sit outside. Covid-19 has taught us a lot about social distancing, wearing masks and sanitising and as a family we all follow these protocols,” Beth said.
As Ballantyne’s life hangs in the balance, doctors and her family have urged the public to register as stem cell donors.
Robin Lewis is a bone marrow donor recipient, after being diagnosed with leukemia, as well as a rare incurable genetic disease called Fanconi anemia, and has personally seen the positive impact the transplant can have.
He is working with the SA Bone Marrow Donor Registry to help recruit more people to donate.
“A stem cell transplant is not painful and can be compared to a blood donation. You don’t lose anything in the process. Registering as a stem cell donor is free, quick and not painful.
“Ethnicity on the donor database is crucial as it plays an important role in matching donors to patients and most people in general good health can sign up. It’s a minor inconvenience to yourself to save a life and all costs are paid for,” Lewis said.
To be a donor one must be between the ages of 18 and 45.
Visit https://www.dkms-africa.org/ for more information.
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