Imagine a cure to a condition so severe that the only option is to disconnect half your child’s brain. That was the reality for eight-year-old Bella and her mom Bev in 2013.
Bella was diagnosed with Rasmussen’s Encephalitis (RE) five years ago, which is a rare neurological disease that causes epileptic seizures, cognitive deficits and, in some cases, paralysis of half the body. RE is resistant to standard anti-seizure medicines, so the only known “cure” is a hemispherectomy. With no children’s hospital here at home, Bella desperately needed out-of-province treatment. Her medical team sent her the Stollery Children’s Hospital in Edmonton for the complex and lengthy surgery, which took more than eight hours, effectively paralyzing Bella’s entire left side. It was a drastic solution to a severe condition that made national headlines.
The Saskatoon girl underwent many months of challenging rehabilitation and occupational therapy in Edmonton to regain function on the left side of her body. With the community fundraising for the family, Mom Bev went on unpaid leave from her job to remain by young Bella’s side in Edmonton. It was a long road for the family, with younger sister Ava staying in Saskatoon with relatives during the week and traveling to Edmonton on weekends.
Remarkably, doctors have said that there are no long-term health concerns for Bella, though she still often requires travel to Edmonton and Calgary for check-ups. Still dealing with several seizures a day, Bella receives bi-weekly blood immune treatments here at home to help. She is one of many children in our province who will be a regular visitor to the new Children’s Hospital of Saskatchewan.
Despite her diagnosis and long recovery, Bella has weathered the entire experience bravely and with a positive attitude. A lover of singing, dancing, and games, Bella is a keen fundraiser for the new children’s hospital, sharing her story around the province, raising funds for the Children’s Hospital Radiothon with her personal fundraising page, and enlisting her classmates to participate in school fundraiser Jammin’ 4 Kids.