Townsin debuts documentary honouring daughter Lexi

Royal Roads staff member and student Cheryl-Lynn Townsin is debuting a documentary on the life and struggles of eight children with rare diseases – including her late daughter, Lexi.

Six-year-old Lexi died in 2019 from Blau Syndrome, a rare disorder.

As Townsin tells the Saanich News, the documentary is to honour her daughter:

“We all have our ways of dealing with grief,” Townsin said. “For me it’s about finding purpose. This film gave me the purpose to be able to tell the tragic story of Lexi to help others.”

Townsin completed “RARE HUMANS – Turning Hope into Action” as the capstone project for her Master of Arts degree in Global Leadership.

The documentary chronicles Lexi and the children in seven other families’ trials, tribulations and triumphs as they cope with a variety of rare diseases. “I was also fortunate to interview the world’s leaders in the rare disease community and to share their stories,” Townsin said. The release of the film coincided with Rare Disease Day on the last day of February, called the rarest day on the calendar.

Townsin originally planned the film’s focus to be on Lexi’s battle with Blau Syndrome, which is believed to be caused by a gene mutation, with symptoms usually beginning to surface around the age of four. “Once I got started, I broadened the picture to include seven other families dealing with rare diseases.”

“Eight rare disease families in North America changing the future of medicine as they pursue their missions to cure the incurable,” is how Townsin described the project. “These inspiring stories of love, loss and determination prove that every one of us has the ability to turn hope into action.”

Read the full story at the Saanich News.