Helping the Bruvold Family

From the outside, Zebulun appears to be a perfectly normal, energetic, silly, and sweet four-year-old. However, he has been living with a rare genetic immunodeficiency called chronic granulomatous disease (CGD). His body is incapable of fighting fungal and bacterial infections, which puts him at a severe risk of developing life-threatening infections daily. 

Zebulun has suffered from continuous infections since birth, but despite plateauing in growth at 11 months old and numerous visits to the doctor, the Bruvold family was repeatedly told that it was normal.

Zebulun was finally diagnosed with chronic granulomatous disease in 2021 when he was just under two years old. He was fighting five active infections at the same time, including osteomyelitis, a bone infection that required immediate surgery, a month of long-course of IV antibiotics, and another month of oral antibiotics.

After one month of hospital admissions between Grande Prairie Regional Hospital and Stollery Children's Hospital in Edmonton, Zebulun was growing and thriving infection-free for almost two years.

However, despite meticulous efforts to keep him safe and adherence to his prophylactic medications, Zebulun contracted a fifth invasive infection in 2023. The Bruvold family knew it was time for Zebulun to move to the next stage in his medical journey, which was a bone marrow transplant.

While a long and strenuous process, bone marrow transplants are considered the most promising cure for CGD. This journey began with the Bruvold family relocating from Grand Prairie to Calgary for 5-6 months. It was integral that the family stayed together and supported each other through this process, with his parents and younger brother residing at the Ronald McDonald House while Zebulun received treatment at the Alberta Children’s Hospital.

In addition to months of stressful preparation, Zebulun’s parents were unable to work throughout Zebulun’s treatment in Calgary, focusing as much as possible on providing support for their two children. 

Zeb’s mother, Ashtyn, began sharing their story on a GoFundMe page in 2021, expressing the significant financial burden they found themselves in throughout Zebulun’s medical journey. His treatment required multiple expensive medications, and his family had to take frequent trips to Edmonton and Calgary. She expressed concern that children like Zeb often fall through the cracks, as rare diseases often mean rare support.

We’re glad we could help alleviate some of the Bruvold family’s financial burdens by assisting with their housing payment. 

Following his bone marrow transplant, Zeb underwent a year of isolation for protection while he was immunocompromised. Now he is at home, stable and can have visitors, but he continues to receive care from multiple teams, including Oncology, Surgery, Nephrology, and Physiotherapy, and requires regular medication and antibiotics. 

While he still requires ongoing monitoring due to some kidney damage, Zebulun’s CGD is cured, and the Bruvold’s are incredibly excited to see him continue to grow and thrive.