A groundbreaking clinical trial at BC Children’s Hospital has changed the course of life for Emmett, a two-year-old girl with Nisga'a and Haisla roots, following her diagnosis with a rare and aggressive brain tumour. At 34 weeks of pregnancy, Lana and her wife Lena were told that ultrasounds showed water on their baby’s brain. A fetal MRI later confirmed the presence of a mass. When Emmett was born, a biopsy identified a unique genetic alteration in her brain tumour, which was classified as a high-grade glioma and a stage four cancer diagnosis.
“To find out your child is sick, before they even start their life, was hard,” said Lena Doolan. “If this clinical trial didn’t come about, I don’t think we would have our daughter today.”
The trial, offered through BC Children’s Clinical Trials Super Hub, targeted the specific genetic alteration found in Emmett’s tumour. As a result of the treatment, she was able to transition to oral medication, allowing her family to return to their Haisla and Nisga'a communities to raise Emmett immersed in her cultural traditions.
“Through the clinical trial, we’ve been able to give Emmett a lifestyle we only dreamed of,” Lena said. “She’s now two years old, able to live a normal life, say her ABCs, and sing songs in Haisla and Nisga'a.”
The Clinical Trials Super Hub at BC Children’s Hospital supports investigators and research teams in launching and conducting paediatric clinical trials, with a focus on complex cases such as gene therapies and rare diseases. “A clinical trial is the best, purest form of evidence we have for determining which medications and interventions work,” said Dr. Quynh Doan, senior executive director at BC Children’s Hospital Research Institute. Doan added the donor supported Super Hub provides the infrastructure and expertise needed to ensure children in B.C. and Yukon have access to innovative treatments, creating opportunities for families to benefit from life-changing therapies.
