Cystic fibrosis (CF) is Canada’s most common fatal genetic disease affecting children and young adults. It impacts multiple organ systems, but its greatest effects are on the lungs and the digestive system. 30 per cent of patients develop CF-related liver disease (CFLD).
Diagnosed at birth, Tori Ramsey was notably healthy for a child with CF. She was an avid softball player, determined not to let the effects of CF stop her from doing what she loved. Aside from some sporadic and minor issues, she wasn’t admitted to the hospital for CF-related complications until she was 11 years of age.
As a child, Tori attended the CF clinic at BC Children’s Hospital and quickly bonded with several clinic staff, which brought comfort to otherwise challenging times for both her and her mother, Lynn Ramsey.
“Tori never wavered in her commitment to treatment, understanding how important it was for maintaining her quality of life. I miss our conversations, our water fights and the laughs that we shared. She truly was an inspiration to those around her and I am genuinely honoured to have been a part of her life,” says Terry Ho, a physiotherapist with BC Children’s Hospital who frequently treated Tori.
As a young adult patient, Tori eventually transitioned into the care of the CF clinic at St. Paul’s Hospital and grew into a strong advocate for herself — a skill taught to her by her mother.
Pictured: Tori Ramsey (right), Terry Ho, physiotherapist, BC Children's Hospital (centre), Casey Fletcher, Tori's friend and fellow BC Children's CF clinic patient (left)
“When I first met Tori, she was an energetic, friendly, warm athletic young woman. She was a delight to have in the clinic and was a picture of health,” shares Pat MacDiarmid, a social worker with the CF clinic at St. Paul’s.
Tori reached significant milestones in her lifetime, even getting engaged. However, in 2021 — amid planning her wedding — her health began to decline rapidly due to advancing liver disease, ultimately requiring a liver transplant.
Part way through the liver transplant referral process, Tori began to face further complications. Between January and November 2021, she was in and out of the hospital and the St. Paul’s CF clinic while her liver disease advanced. On December 15, 2021, Tori was again admitted to the hospital for lung issues. Her rising carbon monoxide levels sent her to the Intensive Care Unit (ICU) at St. Paul's, where they discovered a blood infection. In the ICU, Tori also experienced lung bleeds and eventually septic shock. She sadly lost her battle with CF on January 15, 2022 at the age of 29.
Since Tori’s passing, her mother Lynn remains focused on her grieving and healing journey.
St. Paul's CF clinic team members Dr. Bradley Quon, medical director, and Pat MacDiarmid asked Lynn to participate in a review of Tori’s case with the medical team. Following some much-needed time to grieve the loss of her daughter, Lynn met with the St. Paul’s CF clinic team to share her perspective and explore opportunities for system and care improvements.
“Tori’s case offered an opportunity for learning, reflection and improvement among our CF clinic team and B.C. liver transplant team. From our discussions with Lynn, we identified room for system-level improvement in our liver transplant referral process,” explains Dr. Quon.
“I told Pat, ‘I’ll advocate all day long for CF. I’ll tell my story. I’ll do whatever needs to be done,” says Lynn.
Fueled by an identified need and sparked by Lynn’s advocacy, in 2023, Cystic Fibrosis Care BC (CFCBC), a provincial health improvement network, in partnership with BC Transplant and the B.C. adult CF clinic teams, created new guidelines related to liver transplant for CF patients. These guidelines support decision making in the transplant referral process and consist of early referral recommendations that better address the unique and rapid manifestation of liver failure symptoms in CF patients, as seen in Tori’s case.
Dr. Mark Chilvers, medical director for Cystic Fibrosis Care BC and the BC Children’s CF clinic shares the importance of patient and patient caregiver feedback:
“Patients and caregivers often have perspectives that can transform health-care system improvement. Lynn Ramsey’s feedback on her daughter Tori’s experience within the health-care setting was incredibly impactful. It has already improved care and can hopefully save the lives of CF patients with liver disease.”
Pictured: Lynn Ramsey (left) and Tori Ramsey (right)
Lynn’s championing and philanthropy for CF care hasn’t stopped at the completion of the guidelines. She now hosts an annual softball tournament in partnership with members of Fleetwood Fastpitch, the “Annual Tori Ramsey Memorial Tournament for Cystic Fibrosis,” and facilitates an annual Purdy’s chocolates fundraiser. Both initiatives’ proceeds are donated to Cystic Fibrosis Canada.
For more information on Cystic fibrosis in B.C., visit the CFCBC webpage.
