A Gabriola Island family is in desperate need of a bone marrow transplant for their baby.
Their nine-month-old was diagnosed with a rare illness that requires the transplant but there are no matches on the international registries.
“It affects about four to six out of a million children internationally,” said Larisa Bothma, his mother.
At five months old, doctors diagnosed Arend as having Chronic Granulomatous Disease or CGD.
“CGD affects his white blood cells. It means he can’t fight bacterial and fungal infections,” said Bothma.
It means they have to give him medication three times a day but these medications are extremely hard on his liver and kidneys.
His parents also have to be extremely protective of what Arend is exposed to until a matching stem cell donor is found.
“He won’t be able to attend any daycare facility until he’s been through his bone marrow transplant and recovered,” said Bothma.
One of the challenges in finding a match is his unusual ethnicity. Arend’s mother is Latvian and his father is South African.
“His ethnicity matters in terms of finding a donor because you have a better likelihood of finding a donor within your own ethnic match or heritage,” said Bothma
The Canadian Stem Cell Registry has only four per cent of its registrants from minority populations within Canada.
“People don’t really know about these things unless they go looking for them or something comes up and you have to. Canada has a lot of immigrants and it’s not high on the priority list of immigrants to look for or find information on,” said Emil Bothma, Arend’s father.
“So that makes it really hard for people like him to find a match and we’re lucky that he’s healthy and he can currently wait,” said Larisa Bothma.
But their life is on hold, with the donation process and recovery expected to take a year.
The Bothma’s are urging people to join the stem cell registry, those between ages 17 and 35 are eligible within Canada. If not to help their son, then someone else who is in need of a life-saving transplant.
A GoFundMe has been set up to help the Bothmas with expenses they will face in relation to Arend’s needed medical treatments.
On May 30 last year, a Victoria man who advocated for more biracial stem donors died after no match was found for him.
Kendall Hanson
