Arend Bothma was diagnosed with Chronic Granulomatous Disease (CGD) a rare immune deficiency so uncommon it affects approximately one in a million people. His body cannot fight bacterial or fungal infections. He cannot swim in lakes. He cannot touch soil. He was born to a family who lived outside on Gabriola Island, and he is essentially allergic to the life they built.
At just 4 months old, Arend was airlifted to BC Children’s Hospital, where the family learned that the only known cure is a bone marrow transplant, and they would need to stay in Vancouver.
That’s when they discovered a place of care at Ronald McDonald House. Mom Larisa remembers: “I walked in and immediately had this feeling of: I’m safe. And I actually wanted to be there more than home.”
The Bothma family lived at Ronald McDonald House for nearly nine consecutive months during Arend’s treatment. Emil cooked every meal in the shared kitchen and walked it across to the hospital, three times a day, for 63 days while Larisa stayed with Arend in isolation. Their daughter Marita, just three years old when they first arrived, found more than a place to stay. She found art therapy and the education program, she formed friendships with children who understood, and she learnt how to ride a bike for the first time at the House. And Arend, finally outside of the hospital, found priceless moments of joy and normalcy in the music room.
Most importantly, they were able to stay close to Arend and each other. “You need your family there to support you, because this affects us all,” says Larisa.
