A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others don含羞草研究社檛 face her family含羞草研究社檚 dilemma.

Larisa Bothma含羞草研究社檚 nine-month-old son Arend has chronic Granulomatous disease, which doesn含羞草研究社檛 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含羞草研究社檛 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.

含羞草研究社淗e can含羞草研究社檛 stay on it forever,含羞草研究社� she said. 含羞草研究社淗e 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含羞草研究社檛 live past 40. The medication is harsh and contributes to that as well.含羞草研究社�

In order to ensure Arend doesn含羞草研究社檛 come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as 含羞草研究社渁nything that could harbour mould or mildew.含羞草研究社�

含羞草研究社淗e含羞草研究社檚 very susceptible to fungal infections, which is basically, absolutely everywhere,含羞草研究社� said Bothma. 含羞草研究社淚t含羞草研究社檚 in the dirt. It含羞草研究社檚 in the water, it含羞草研究社檚 in the air, so if there含羞草研究社檚 a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He can含羞草研究社檛 touch the ground 含羞草研究社� He can含羞草研究社檛 go to playgrounds. He can含羞草研究社檛 touch trees. He含羞草研究社檚 not allowed to swim in lakes or rivers, visit farms, touch hay. We can含羞草研究社檛 have pets in the house, so it含羞草研究社檚 quite a lot.含羞草研究社�

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含羞草研究社檚 Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.

含羞草研究社淢y focus is to populate the stem cell registry with as many minority ethnicities as possible,含羞草研究社� said Bothma. 含羞草研究社淚 want to use [Arend] as the encouragement for people to join and also for people含羞草研究社檚 awareness about that and awareness about even donating cord blood across Canada.含羞草研究社�

Adrienne San Juan, Canadian Blood Services含羞草研究社� 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含羞草研究社檝e 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含羞草研究社檛 related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isn含羞草研究社檛 含羞草研究社渁 valid representation含羞草研究社� due to Canada含羞草研究社檚 ethnic diversity.

含羞草研究社淢ore often than not, it含羞草研究社檚 usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,含羞草研究社� said San Juan. 含羞草研究社淚 think only four per cent of our registrants 含羞草研究社� are people who come from multiple ethnicities. And that含羞草研究社檚 not even to say, a patient who含羞草研究社檚 half Chinese and half Caucasian, it含羞草研究社檚 probably less than four per cent of registrants on the registry who are that exact same match.含羞草研究社�

People who register to be a stem cell donor aren含羞草研究社檛 donating immediately, said San Juan, but promising to do so.

含羞草研究社淚t含羞草研究社檚 not like blood or plasma, where they含羞草研究社檙e donating any product at that time,含羞草研究社� said San Juan. 含羞草研究社淚t含羞草研究社檚 basically a commitment saying that if they含羞草研究社檙e 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含羞草研究社檙e more likely to win the lottery than to actually match a patient in need.含羞草研究社�

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含羞草研究社檛 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含羞草研究社檚 treatment, a family friend has set up an online fundraising page with a target of $50,000. Donations can be made at . The Bothmas have also started an Instagram account for Arend at .

For more information on stem cell donations, visit .

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