A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others don91裸聊视频檛 face her family91裸聊视频檚 dilemma.
Larisa Bothma91裸聊视频檚 nine-month-old son Arend has chronic Granulomatous disease, which doesn91裸聊视频檛 allow his white blood cells to battle bacterial and fungal infections, and a bone cell transplant is the only known cure currently. A match can91裸聊视频檛 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.
91裸聊视频淗e can91裸聊视频檛 stay on it forever,91裸聊视频� she said. 91裸聊视频淗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 don91裸聊视频檛 live past 40. The medication is harsh and contributes to that as well.91裸聊视频�
In order to ensure Arend doesn91裸聊视频檛 come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as 91裸聊视频渁nything that could harbour mould or mildew.91裸聊视频�
91裸聊视频淗e91裸聊视频檚 very susceptible to fungal infections, which is basically, absolutely everywhere,91裸聊视频� said Bothma. 91裸聊视频淚t91裸聊视频檚 in the dirt. It91裸聊视频檚 in the water, it91裸聊视频檚 in the air, so if there91裸聊视频檚 a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He can91裸聊视频檛 touch the ground 91裸聊视频� He can91裸聊视频檛 go to playgrounds. He can91裸聊视频檛 touch trees. He91裸聊视频檚 not allowed to swim in lakes or rivers, visit farms, touch hay. We can91裸聊视频檛 have pets in the house, so it91裸聊视频檚 quite a lot.91裸聊视频�
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 Emil91裸聊视频檚 Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.
91裸聊视频淢y focus is to populate the stem cell registry with as many minority ethnicities as possible,91裸聊视频� said Bothma. 91裸聊视频淚 want to use [Arend] as the encouragement for people to join and also for people91裸聊视频檚 awareness about that and awareness about even donating cord blood across Canada.91裸聊视频�
Adrienne San Juan, Canadian Blood Services91裸聊视频� 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) they91裸聊视频檝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 aren91裸聊视频檛 related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isn91裸聊视频檛 91裸聊视频渁 valid representation91裸聊视频� due to Canada91裸聊视频檚 ethnic diversity.
91裸聊视频淢ore often than not, it91裸聊视频檚 usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,91裸聊视频� said San Juan. 91裸聊视频淚 think only four per cent of our registrants 91裸聊视频� are people who come from multiple ethnicities. And that91裸聊视频檚 not even to say, a patient who91裸聊视频檚 half Chinese and half Caucasian, it91裸聊视频檚 probably less than four per cent of registrants on the registry who are that exact same match.91裸聊视频�
People who register to be a stem cell donor aren91裸聊视频檛 donating immediately, said San Juan, but promising to do so.
91裸聊视频淚t91裸聊视频檚 not like blood or plasma, where they91裸聊视频檙e donating any product at that time,91裸聊视频� said San Juan. 91裸聊视频淚t91裸聊视频檚 basically a commitment saying that if they91裸聊视频檙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, you91裸聊视频檙e more likely to win the lottery than to actually match a patient in need.91裸聊视频�
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, aren91裸聊视频檛 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 Arend91裸聊视频檚 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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