A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others don香蕉视频直播檛 face her family香蕉视频直播檚 dilemma.
Larisa Bothma香蕉视频直播檚 nine-month-old son Arend has chronic Granulomatous disease, which doesn香蕉视频直播檛 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香蕉视频直播檛 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.
香蕉视频直播淗e can香蕉视频直播檛 stay on it forever,香蕉视频直播� she said. 香蕉视频直播淗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香蕉视频直播檛 live past 40. The medication is harsh and contributes to that as well.香蕉视频直播�
In order to ensure Arend doesn香蕉视频直播檛 come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as 香蕉视频直播渁nything that could harbour mould or mildew.香蕉视频直播�
香蕉视频直播淗e香蕉视频直播檚 very susceptible to fungal infections, which is basically, absolutely everywhere,香蕉视频直播� said Bothma. 香蕉视频直播淚t香蕉视频直播檚 in the dirt. It香蕉视频直播檚 in the water, it香蕉视频直播檚 in the air, so if there香蕉视频直播檚 a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He can香蕉视频直播檛 touch the ground 香蕉视频直播� He can香蕉视频直播檛 go to playgrounds. He can香蕉视频直播檛 touch trees. He香蕉视频直播檚 not allowed to swim in lakes or rivers, visit farms, touch hay. We can香蕉视频直播檛 have pets in the house, so it香蕉视频直播檚 quite a lot.香蕉视频直播�
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香蕉视频直播檚 Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.
香蕉视频直播淢y focus is to populate the stem cell registry with as many minority ethnicities as possible,香蕉视频直播� said Bothma. 香蕉视频直播淚 want to use [Arend] as the encouragement for people to join and also for people香蕉视频直播檚 awareness about that and awareness about even donating cord blood across Canada.香蕉视频直播�
Adrienne San Juan, Canadian Blood Services香蕉视频直播� 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香蕉视频直播檝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香蕉视频直播檛 related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isn香蕉视频直播檛 香蕉视频直播渁 valid representation香蕉视频直播� due to Canada香蕉视频直播檚 ethnic diversity.
香蕉视频直播淢ore often than not, it香蕉视频直播檚 usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,香蕉视频直播� said San Juan. 香蕉视频直播淚 think only four per cent of our registrants 香蕉视频直播� are people who come from multiple ethnicities. And that香蕉视频直播檚 not even to say, a patient who香蕉视频直播檚 half Chinese and half Caucasian, it香蕉视频直播檚 probably less than four per cent of registrants on the registry who are that exact same match.香蕉视频直播�
People who register to be a stem cell donor aren香蕉视频直播檛 donating immediately, said San Juan, but promising to do so.
香蕉视频直播淚t香蕉视频直播檚 not like blood or plasma, where they香蕉视频直播檙e donating any product at that time,香蕉视频直播� said San Juan. 香蕉视频直播淚t香蕉视频直播檚 basically a commitment saying that if they香蕉视频直播檙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香蕉视频直播檙e more likely to win the lottery than to actually match a patient in need.香蕉视频直播�
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香蕉视频直播檛 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香蕉视频直播檚 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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