Vancouver Island mom’s grief fuels documentary of ‘Turning Hope into Action’

Lexi, 6, died in 2019 from Blau Syndrome and is among the children documented

Cheryl-Lynn Townsin and daughter Lexi. (Photo courtesy of Cheryl-Lynn Townsin)

Cheryl-Lynn Townsin and daughter Lexi. (Photo courtesy of Cheryl-Lynn Townsin)

The passage of time does little to lessen the burden borne by a mother who’s lost a child.

For Cheryl-Lynn Townsin, making a documentary after the death of her six-year-old daughter, Lexi, in 2019 from Blau Syndrome is about sharing stories of Lexi’s battle and the struggles of other children with rare diseases.

“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.

RELATED: Quest to cure Blau syndrome a family affair

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.”

The COVID-19 pandemic sidelined her plan to hold a symposium at Royal Roads University (RRU) with doctors from around the world who specialize in rare diseases, but Townsin did manage to connect with a number of global authorities. They include Dr. Ronald Cohen, the CEO of SickKids Hospital, renowned geneticist Dr. Donald Kohn from the University of California at Los Angeles, Dr. Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders, and Dr. Ann Pariser, director of the National Institute for Health/Office of Rare Disease Research in Bethesda, Maryland.

Half of the more than 400 million people who have rare diseases are children, Townsin noted. “That’s more than AIDS and cancer combined,” said Townsin, who has worked at RRU since 2004, most recently as student engagement co-ordinator.

“It’s a misnomer to call them rare diseases. Most people aren’t aware that rare diseases are one of the leading causes of death, and 30 per cent of children with a rare disease will not live until their fifth birthday. These people are changing the future of medicine. Eighty per cent of rare diseases are genetic, so gene therapy offers the potential for finding a cure for so many diseases.”

RELATED: Greater Victoria girl, 6, dies after battling rare genetic syndrome

Townsin says the greatest challenges are raising awareness and securing funding for the research needed to find cures. Canada is one of the only developed countries with no framework for drugs for the treatment of rare diseases, she said, and research is hindered by the fact more funding is allocated globally to common diseases. She referenced a quote from Eli Pariser that illuminates one aspect of the issues:

“We look at cancer as a leading example,” Pariser said. “Cancer is not one disease. Cancer has hundreds of diseases and it may even be thousands of diseases as we start to unravel this, but cancer is a singular word that doesn’t even have an ‘s’ on it and the cancer community has just done a fantastic job about speaking about cancer as one thing when it’s not.”

“The most eye-opening part of my research revolved around the work of Dr. Sidney Farber, who’s known as the father of chemotherapy,” Townsin said. Farber realized they needed a poster child to promote unified support for dealing with the numerous types of childhood cancer and settled on a picture of a boy they called Jimmy that became synonymous with the movement.

RELATED: Royal Roads takes active role in search for cure to rare disease

“It changed the profile and dramatically improved funding,” Townsin said. She believes rare diseases need a similar approach and a unified voice like Farber advanced so successfully. “If you think of these diseases as rare, that undermines the significance of the problem,” she explained. “We need something dramatic like that to raise awareness and generate funding. We need these stories. That’s the reason we decided to share Lexi’s story and the stories of the other children in the film.”

For a trailer of the film, visit this Facebook page. The full documentary, to be distributed to film festivals around the world, is available free until the end of March here.

For more news from Vancouver Island and beyond delivered daily into your inbox, please click here.

rick.stiebel@goldstreamgazette.com

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

The health authority will occupy the building until October 31, 2021. File Photo
Health authority pays town $7.4K monthly to lease Riverside Centre

Facility is being rented for COVID vaccinations

THE CANADIAN PRESS/Darryl Dyck
B.C.’s mass vaccination program will be delivered to Princeton residents from a clinic set up at the Riverside Community Centre. (Darryl Dyck/CP photo)
COVID vaccinations bookings began for local residents last week

Riverside serves as Princeton’s appointment centre

The Regional District of Okanagan-Similkameen will speed up the process for hospitality businesses looking to set up patios during the latest COVID-19 restrictions. Under the most recent restrictions, indoor dining is prohibited, but patio dining is allowed. (John Arendt - Summerland Review)
Regional District of Okanagan-Similkameen speeds up patio permit approval

Initiative to help hospitality businesses affected by latest COVID-19 restrictions

B.C's COVID-19 dashboard shows the peaks and valleys of cases prior to the record daily report of 132 on April 9, 2021. (Dashboard image)
Interior Health has record day of COVID-19 cases

132 cases reported Friday, April 9, more deaths in Vernon hospital outbreak

Your old lawnmower is an environmental disaster. (courtesy photo)
The perfect lawn is pretty hard on the planet

According the government of Canada, an older mower running for an hour can produce as much air pollution as a new car driving 550 kilometres.

B.C. Health Minister Adrian Dix and Premier John Horgan describe vaccine rollout at the legislature, March 29, 2021. (B.C. government)
1,262 more COVID-19 infections in B.C. Friday, 9,574 active cases

Province’s mass vaccination reaches one million people

A second case of COVID-19 has been confirmed at Vernon’s BX Elementary School. (Kerry Hutter photo)
Second COVID case confirmed at Okanagan elementary school

Exposure at Vernon’s BX Elementary happened April 6 and 7

People walk past the Olympic rings in Whistler, B.C., Friday, May 15, 2020. Whistler which is a travel destination for tourists around the world is seeing the effects of travel bans due to COVID-19. THE CANADIAN PRESS/Jonathan Hayward
Adults living, working in Whistler, B.C., eligible for COVID-19 vaccine on Monday

The move comes as the province deals with a rush of COVID-19 and variant cases in the community

RCMP crest. (Black Press Media files)
UPDATE: RCMP investigating after child, 6, dies at motel in Duncan, B.C.

The BC Coroners Service is conducting its own investigation into the circumstances around the child’s death

Highway 97 being converted to four lanes in April 1990. This photo taken in Lake Country. (Greater Vernon Museum and Archives Photo #14025)
HISTORY: How the old Highway 97 in Lake Country got new name

Pelmewash Parkway recognizes the First Nations history in Lake Country

RCMP display some of the fish seized from three suspects who pleaded guilty to violating the Fisheries Act in 2019, in this undated handout photo. THE CANADIAN PRESS/HO - RCMP
3 banned from fishing, holding licences after overfishing violations near Vancouver Island

Mounties seized the group’s 30-foot fishing vessel and all equipment on board at the time

Flight with COVID
Another Kelowna flight with COVID-19 exposure

Westjet flight on April 5 from Kelowna to Edmonton

Most Read