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VIDEO: B.C. family seeking stem cell match for baby with rare blood disorder

Transplant only cure for nine-month-oldB次元官网网址檚 chronic Granulomatous disease

A Gabriola Island mother, whose infant son suffers from a rare blood disorder, hopes more stem cell donors come forward so others donB次元官网网址檛 face her familyB次元官网网址檚 dilemma.

Larisa BothmaB次元官网网址檚 nine-month-old son Arend has chronic Granulomatous disease, which doesnB次元官网网址檛 allow his white blood cells to battle bacterial and fungal infections, and a bone cell transplant is the only known cure currently. A match canB次元官网网址檛 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.

B次元官网网址淗e canB次元官网网址檛 stay on it forever,B次元官网网址 she said. B次元官网网址淗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 donB次元官网网址檛 live past 40. The medication is harsh and contributes to that as well.B次元官网网址

In order to ensure Arend doesnB次元官网网址檛 come in contact with any dangerous particulate matter, Bothma says their house must thoroughly cleaned daily. All houseplants have been removed, as well as B次元官网网址渁nything that could harbour mould or mildew.B次元官网网址

B次元官网网址淗eB次元官网网址檚 very susceptible to fungal infections, which is basically, absolutely everywhere,B次元官网网址 said Bothma. B次元官网网址淚tB次元官网网址檚 in the dirt. ItB次元官网网址檚 in the water, itB次元官网网址檚 in the air, so if thereB次元官网网址檚 a breeze and it shoots a fungal spore in the wrong direction, he can inhale that. He canB次元官网网址檛 touch the ground B次元官网网址 He canB次元官网网址檛 go to playgrounds. He canB次元官网网址檛 touch trees. HeB次元官网网址檚 not allowed to swim in lakes or rivers, visit farms, touch hay. We canB次元官网网址檛 have pets in the house, so itB次元官网网址檚 quite a lot.B次元官网网址

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 EmilB次元官网网址檚 Afrikaner heritage. Bothma also hopes her advocacy can help diversify the national stem cell registry to help others in similar predicaments.

B次元官网网址淢y focus is to populate the stem cell registry with as many minority ethnicities as possible,B次元官网网址 said Bothma. B次元官网网址淚 want to use [Arend] as the encouragement for people to join and also for peopleB次元官网网址檚 awareness about that and awareness about even donating cord blood across Canada.B次元官网网址

Adrienne San Juan, Canadian Blood ServicesB次元官网网址 territory manager for donor relations, told the B次元官网网址 Bulletin the odds of finding a match for any patient are influenced by the complexity of human leukocyte antigen typing (genetic markers) theyB次元官网网址檝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 arenB次元官网网址檛 related to them, said San Juan. Currently the Canadian stem cell registry has 66 per cent Caucasian donors, she said, which isnB次元官网网址檛 B次元官网网址渁 valid representationB次元官网网址 due to CanadaB次元官网网址檚 ethnic diversity.

B次元官网网址淢ore often than not, itB次元官网网址檚 usually our more ethnic and diverse patients who have trouble finding a match, more so when you are of mixed descent,B次元官网网址 said San Juan. B次元官网网址淚 think only four per cent of our registrants B次元官网网址 are people who come from multiple ethnicities. And thatB次元官网网址檚 not even to say, a patient whoB次元官网网址檚 half Chinese and half Caucasian, itB次元官网网址檚 probably less than four per cent of registrants on the registry who are that exact same match.B次元官网网址

People who register to be a stem cell donor arenB次元官网网址檛 donating immediately, said San Juan, but promising to do so.

B次元官网网址淚tB次元官网网址檚 not like blood or plasma, where theyB次元官网网址檙e donating any product at that time,B次元官网网址 said San Juan. B次元官网网址淚tB次元官网网址檚 basically a commitment saying that if theyB次元官网网址檙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, youB次元官网网址檙e more likely to win the lottery than to actually match a patient in need.B次元官网网址

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, arenB次元官网网址檛 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 ArendB次元官网网址檚 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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Karl Yu

About the Author: Karl Yu

I joined Black Press in 2010 and cover education, court and RDN. I am a Ma Murray and CCNA award winner.
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