Greater Victoria mother’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 fb.watch/3PS4ghId7d. The full documentary, to be distributed to film festivals around the world, is available free until the end of March at youtu.be/YSKj539gXJAINCL.

rick.stiebel@goldstreamgazette.com

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

Just Posted

A rider crosses a “skinny” on the newly opened trail known as 90s Jank, built within the Hartland system by volunteers with the South Island Mountain Bike Society. (Youtube/MTB Matt)
Mountain bikers celebrate first new trail in years on Saanich’s Mount Work

90s Jank trail a product of licence agreement between CRD and mountain bike society

The hiring of out-of-province workers by the Canadian Red Cross to staff the vaccination centre in Langford has raised eyebrows. (Black Press Media file photo)
Red Cross hires out-of-province workers to staff Langford vaccination centre

Staffer worries local jobs weren’t offered to local people

An Extinction Rebellion Vancouver Island (XRVI) climate change event in 2019 saw a large crowd occupy the Johnson Street bridge. Black Press File Photo
Extinction Rebellion activists march from Vancouver to Victoria this weekend

The four-day trek ends at the B.C. legislature Monday, protest province’s environmental policy

A weekend of sunny skies may have Victoria breaking temperature records, according to an Environment Canada meteorologist. (Jane Skrypnek/News Staff)
Temperature records eyed for Victoria with sunny weekend forcast

Victoria hit the highest April 14 temperature since 1926 on Wednesday

Fire crews respond to the 3500-block of Blanshard Street in Saanich on April 16. (Devon Bidal/News Staff)
UPDATED: BC Hydro crews repairing failed electrical equipment in Saanich

Vernon Avenue reopen to traffic following closure

Rainbow trouts thrashing with life as they’re about to be transferred to the largest lake of their lives, even though it’s pretty small. These rainbows have a blue tinge because they matched the blue of their hatchery pen, but soon they’ll take on the green-browns of their new home at Lookout Lake. (Zoe Ducklow/News Staff)
VIDEO: Lookout Lake stocked with hatchery trout to delight of a seniors fishing club

The Cherish Trout Scouts made plans to come back fishing soon

For Leela Harrop, the recent death of her brother Raju Tiwari pushed her to sign up for the vaccine. Photo supplied
Island woman on fence about vaccine prompted by brother’s death

Leela Harrop of Comox says she did have issues with signing up online this past week

Royal Inland Hospital in Kamloops. (Dave Eagles/Kamloops This Week file photo)
RCMP intercept vehicle fleeing with infant taken from Kamloops hospital

The baby was at the hospital receiving life-saving care

Vancouver Police Const. Deepak Sood is under review by the Independent Investigations Office of B.C. after making comments to a harm reduction advocate Sunday, April 11. (Screen grab)
VIDEO: Vancouver officer convicted of uttering threats under watchdog review again

Const. Deepak Sood was recorded Sunday saying ‘I’ll smack you’ and ‘go back to selling drugs’ to a harm reduction advocate

Provincial health officer Dr. Bonnie Henry prepares a daily update on the coronavirus pandemic, April 21, 2020. (B.C. Government)
B.C.’s COVID-19 infection rate persists, 1,005 new cases Friday

Hospitalization up to 425, six more virus-related deaths

The Nautical Dog Cafe at Skaha marina is getting its patio ready in hopes Mother Nature will provide where provincial restrictions have taken away indoor dining. (Facebook)
‘A lot of instability’: B.C. restaurants in layoff limbo

As COVID-19 cases stay high, restaurants in British Columbia are closed to indoor dining

Prime Minister Justin Trudeau looks on as Deputy Prime Minister and Finance Minister Chrystia Freeland responds to a question during a news conference on Parliament Hill in Ottawa, Tuesday, Aug. 18, 2020. THE CANADIAN PRESS/Adrian Wyld
Expectations high as Trudeau Liberals get ready to unveil first pandemic budget

The Liberals will look to thread an economic needle with Monday’s budget

John Furlong, Own The Podium board chairman and former CEO of the Vancouver Olympics, addresses a Vancouver Board of Trade luncheon in Vancouver, B.C., on Wednesday November 25, 2015.THE CANADIAN PRESS/Darryl Dyck
John Furlong presents 2030 Winter Games vision to Vancouver Board of Trade

Vancouver and Whistler would remain among host sites because of 2010 sport venues still operational

Photo by Metro Creative Connection
New campgrounds coming to B.C. parks as part of $83M provincial boost

This season alone, 185 campsites are being added to provincial parks, says Minister of Environment and Climate Change

Most Read