Gabriola Island’s Arend has finally found his match, offering a glimmer of hope to his loved ones and those battling a similar story.
The nine-month-old suffers from a rare blood disease called chronic granulomatous, which makes fighting off fungal or bacterial infections challenging due to a lack of functioning white blood cells.
The infant has to take antibiotics and antifungals three times a day to hopefully avoid infection—but they have harmful effects on liver and kidney function and decrease life expectancy to just 40 years, according to mom Larisa Bothma.
“The disease only affects four out of one-million people, and the only cure is a stem cell transplant,” Larisa told Victoria Buzz.
But just last week, Larisa and her family, including husband Emil and young daughter Marita, received good news—Arend found his donor match, which was 1 in 39 million.
That’s because 39 million people are registered in the stem-cell registry internationally, explains Larisa.
“When he was diagnosed in October at five months old, nobody was in the registry for him,” she recalled.
“And then I began campaigning, and whether it was through my efforts or just someone else’s efforts who’s doing the same thing as me, somebody has signed up since then, and they’re his donor.”
And while a sigh of relief, it’s still a mix of emotions.
“It’s really scary as well,” said Larisa.
“It means that we’re one step closer to the transplant, which is a terrifying thing for any parent. But I feel relieved that somebody did pop up because it’s really hard to hear as a parent when there’s nobody there.”
Larisa says the next steps involve meeting with a transplant immunology team, who will help to determine the best time to undergo treatment at BC Children’s Hospital in Vancouver.
“With his condition, it’s a little bit tricky because he’s currently healthy,” said Larisa.
“Going into transplant, you want them to be healthy, but also, since he’s healthy, he has an opportunity to keep growing and get older so that he’s stronger when he goes through chemo and radiation.
“So we also don’t want to rush into it, but we want to make sure that it gets done before he has any further infection that could cause a lot of harm to his body, making transplant harder.”
Call for community support
Leading up to Arend’s stem cell transplant, Larisa and her family are calling for community support, setting up a GoFundMe page to raise $50,000 in funds to help ease any financial burden.
Once under treatment, they’ll endure around three months full-time at BC Children’s Hospital before moving into a permanent home as Arend recovers and continues to have checkups.
“We’re basically going to relocate to Vancouver,” said Larisa, “and I would hope that my husband could take time off work so that he can care for our eldest daughter and just be there to support me.”
Meanwhile, Larisa’s forging on with her stem cell registration and awareness advocacy, pointing to Arend’s Instagram page as an educational tool that also shines a light on his journey.
“Please continue to spread the word about joining the stem cell registry and sign up to donate blood and platelets—this is something Arend will need during transplant,” she added.
“Let’s give the same hope to other families who are waiting for their match.”
