A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others donsa国际传媒檛 face her familysa国际传媒檚 dilemma.
Larisa Bothmasa国际传媒檚 nine-month-old son Arend has chronic Granulomatous disease, which doesnsa国际传媒檛 allow his white blood cells to battle bacterial and fungal infections, and a bone cell transplant is the only known cure currently. A match cansa国际传媒檛 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.
sa国际传媒淗e cansa国际传媒檛 stay on it forever,sa国际传媒� she said. sa国际传媒淗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 donsa国际传媒檛 live past 40. The medication is harsh and contributes to that as well.sa国际传媒�
In order to ensure Arend doesnsa国际传媒檛 come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as sa国际传媒渁nything that could harbour mould or mildew.sa国际传媒�
sa国际传媒淗esa国际传媒檚 very susceptible to fungal infections, which is basically, absolutely everywhere,sa国际传媒� said Bothma. sa国际传媒淚tsa国际传媒檚 in the dirt. Itsa国际传媒檚 in the water, itsa国际传媒檚 in the air, so if theresa国际传媒檚 a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He cansa国际传媒檛 touch the ground sa国际传媒� He cansa国际传媒檛 go to playgrounds. He cansa国际传媒檛 touch trees. Hesa国际传媒檚 not allowed to swim in lakes or rivers, visit farms, touch hay. We cansa国际传媒檛 have pets in the house, so itsa国际传媒檚 quite a lot.sa国际传媒�
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 Emilsa国际传媒檚 Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.
sa国际传媒淢y focus is to populate the stem cell registry with as many minority ethnicities as possible,sa国际传媒� said Bothma. sa国际传媒淚 want to use [Arend] as the encouragement for people to join and also for peoplesa国际传媒檚 awareness about that and awareness about even donating cord blood across Canada.sa国际传媒�
Adrienne San Juan, Canadian Blood Servicessa国际传媒� 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) theysa国际传媒檝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 arensa国际传媒檛 related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isnsa国际传媒檛 sa国际传媒渁 valid representationsa国际传媒� due to Canadasa国际传媒檚 ethnic diversity.
sa国际传媒淢ore often than not, itsa国际传媒檚 usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,sa国际传媒� said San Juan. sa国际传媒淚 think only four per cent of our registrants sa国际传媒� are people who come from multiple ethnicities. And thatsa国际传媒檚 not even to say, a patient whosa国际传媒檚 half Chinese and half Caucasian, itsa国际传媒檚 probably less than four per cent of registrants on the registry who are that exact same match.sa国际传媒�
People who register to be a stem cell donor arensa国际传媒檛 donating immediately, said San Juan, but promising to do so.
sa国际传媒淚tsa国际传媒檚 not like blood or plasma, where theysa国际传媒檙e donating any product at that time,sa国际传媒� said San Juan. sa国际传媒淚tsa国际传媒檚 basically a commitment saying that if theysa国际传媒檙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, yousa国际传媒檙e more likely to win the lottery than to actually match a patient in need.sa国际传媒�
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, arensa国际传媒檛 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 Arendsa国际传媒檚 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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