Gabriola Island parents have found a stem cell donor for their infant who has a rare blood disorder.
Larisa Bothma’s nine-month-old son Arend has chronic Granulomatous disease, which doesn’t allow his blood cells to battle bacterial and fungal infections, and a bone cell transplant is the only known cure. Given the child’s Latvian and Afrikaners ancestries, locating a match was difficult, but a donor has been found, she said.
The family is expecting to meet with a transplant team in the coming weeks to decide timing of the transplant and Arend will have to undergo extensive screening before he is considered ready, said Bothma. The donor will be available for a maximum of nine months, as there may be others waiting to be matched, she said.
There are things to take into consideration, including timing, according to Bothma.
“In terms of waiting, chemotherapy and radiation is really harsh on people’s bodies and since Arend is so young and little, it’s a lot for him to go through,” she said. “The original thought was to let him grow up a little bit to become stronger, maybe to the age of two or three, before we did this, but now seeing how hard it was to find him a donor … we have to decide, do we go ahead with this donor a little bit earlier then planned? Or do we let him become healthier, stronger, so when he goes through chemo and radiation, he just has a little more subsistence on his body?”
There are also expenses related to travel and long-term stay in Vancouver for the transplant and recovery, said Bothma. She is already taking time off work and her husband would have to do the same.
“Arend will have to be in hospital a minimum of 100 days, if all goes well, and I’ll be there with him that whole time,” Bothma said. “I’m hoping that my husband and my daughter will stay at the Ronald McDonald House during that time. After those 100 days, if they say he’s healthy enough … Arend and I move in as well with my husband and daughter. Then we stay there for months until they deem him ready to come back to the Island. And they’ll be very, very cautious about letting us come back home.”
Whatever the family decides, Bothma is still advocating for people to register for Canadian Blood Services’ stem cell registry.
“I want to continue for his sake, in case this donor isn’t going to be his donor in the end, but also just for everyone else,” said Bothma. “I don’t want anyone else to have to wait the way we did.”
A friend of the Bothma’s started a GoFundMe page, which can be viewed at www.gofund.me/99e45048.
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