A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others don’t face her family’s dilemma.
Larisa Bothma’s nine-month-old son Arend has chronic Granulomatous disease, which doesn’t allow his white blood cells to battle bacterial and fungal infections, and a bone cell transplant is the only known cure currently. A match can’t be found and while they bide their time, waiting for a suitable donor, Arend must take anti-fungal and antibiotic medication daily, which upsets his stomach. Medication costs are partially covered, but still expensive, Bothma said.
“He can’t stay on it forever,” she said. “He has to stay on it until he has a stem cell transplant, but it could cause gut problems. It could cause problems in his liver or kidneys. Generally, people with this condition, CGD, they don’t live past 40. The medication is harsh and contributes to that as well.”
In order to ensure Arend doesn’t come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as “anything that could harbour mould or mildew.”
“He’s very susceptible to fungal infections, which is basically, absolutely everywhere,” said Bothma. “It’s in the dirt. It’s in the water, it’s in the air, so if there’s a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He can’t touch the ground … He can’t go to playgrounds. He can’t touch trees. He’s not allowed to swim in lakes or rivers, visit farms, touch hay. We can’t have pets in the house, so it’s quite a lot.”
Bothma is of Latvian descent and husband Emil is from South Africa and there are no matches on the Canadian stem cell registry. She hopes that a Latvian expatriate or someone from the Netherlands, France or Germany might be able to help, given Emil’s Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.
“My focus is to populate the stem cell registry with as many minority ethnicities as possible,” said Bothma. “I want to use [Arend] as the encouragement for people to join and also for people’s awareness about that and awareness about even donating cord blood across Canada.”
Adrienne San Juan, Canadian Blood Services’ territory manager for donor relations, told the News Bulletin the odds of finding a match for any patient are influenced by the complexity of human leukocyte antigen typing (genetic markers) they’ve inherited. Every community has specific inherited genetic markers, she said, which is why patients are more likely to find a donor from within their own ancestral group.
Approximately 25 per cent of patients waiting for a stem cell transplant will find a match within their families, while the other 75 per cent are matched with donors who aren’t related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isn’t “a valid representation” due to Canada’s ethnic diversity.
“More often than not, it’s usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,” said San Juan. “I think only four per cent of our registrants … are people who come from multiple ethnicities. And that’s not even to say, a patient who’s half Chinese and half Caucasian, it’s probably less than four per cent of registrants on the registry who are that exact same match.”
People who register to be a stem cell donor aren’t donating immediately, said San Juan, but promising to do so.
“It’s not like blood or plasma, where they’re donating any product at that time,” said San Juan. “It’s basically a commitment saying that if they’re ever matched with a patient in the future, that they will donate their stem cells at that time. It could be a few months from when they donated, it could be three years, but more than likely, you’re more likely to win the lottery than to actually match a patient in need.”
In terms of actually donating stem cells, San Juan said it is similar to blood donation and donors would have to go to Vancouver General Hospital.
Stem cell drives, where participants provide a swab sample, aren’t being held due to COVID-19 restrictions but people can still contribute. Canadian Blood Services will mail out kits so that people can take a swab at home and then mail the kit back.
Because of costs for travel and recovery related to Arend’s treatment, a family friend has set up an online fundraising page with a target of $50,000. Donations can be made at www.gofund.me/99e45048. The Bothmas have also started an Instagram account for Arend at @arendagulhas.
For more information on stem cell donations, visit www.blood.ca.