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

Two-year-old Ivy McLeod, seen here on April 9, 2021 with four-year-old sister Elena and mom Vanessa, was born with limb differences. The family, including husband/dad Sean McLeod, is looking for a family puppy that also has a limb difference. (Jenna Hauck/ Chilliwack Progress)
Chilliwack family looking for puppy with limb difference, just like 2-year-old Ivy

Ivy McLeod born as bilateral amputee, now her family wants to find ‘companion’ puppy for her

The old seniors centre is adjacent to Mission Leisure Centre, which will compliment programs, amenities, parking, and security for the youth centre. Google Maps image.
Mission’s old seniors centre to be turned into youth centre

Council approves renovation costs of $105,000; youth lounge budget increase of $66,000

Four members with Divers for Cleaner Lakes and Oceans were out at Cultus Lake on March 28 and 29 hauling trash out of the waters. (Henry Wang)
PHOTOS: Out-of-town divers remove 100s of pounds of trash from Cultus Lake

Members of Divers for Cleaner Lakes and Oceans hauled out 470 pounds of trash over two days

People stroll through rows of tulips in bloom during the Tulips of the Valley Festival on May 2, 2017. The colourful spring event, now called Chilliwack Tulips, opens on Sunday, April 11, 2021. (Jenna Hauck/ Chilliwack Progress file)
Chilliwack tulip attraction open this weekend after being closed last year due to COVID-19

More than 6.5 million bulbs in all at this year’s colourful Chilliwack Tulips event

web
Mission mayoral hopefuls quizzed by chamber

All six candidates participate in virtual question period

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

Emergency crews on scene after a small plane crashed in a grassy area on the northeast side of Boundary Bay Airport Saturday morning (April 10). A freelancer said the plane caught fire and one person was transported to hospital by BC Emergency Health Services. (Photo: Shane MacKichan)
1 taken to hospital after plane crash at Metro Vancouver airport

Plane appears to have suffered ‘significant’ damage, says freelancer

A vehicle that was driven through the wall of a parkade at Uptown Shopping Centre and into the nearby Walmart on April 9 was removed through another hole in the wall later that night. (Photo via Saanich Police Department and Ayush Kakkar)
Vehicle launched into B.C. Walmart removed following rescue of trapped workers

Crews cut new hole in parkade wall to remove vehicle safely

As of Saturday, April 10, people born in 1961 are the latest to be eligible for a COVID-19 vaccine. (Black Press files)
B.C. residents age 60+ can now register to get their COVID-19 vaccine

Vaccine registration is now open to people born in 1961 or earlier

A new saline gargle test, made in B.C., will soon be replacing COVID-19 nasal swab tests for kids. (PHSA screenshot)
Take-home COVID-19 tests available for some B.C. students who fall ill at school

BC Children’s Hospital plans to provide 1,200 kits to Vancouver district schools this April

Ruming Jiang and his dog Chiu Chiu are doing fine following a brush with hypothermia that saw several people work together to get them out of the Fraser River near Langley’s Derby Reach Park on March 25, 2021 (Special to the Advance Times)
Man finds men who rescued him from drowning in B.C.’s Fraser River

A grateful Ruming Jiang says he will thank them again, this time in person when the pandemic ends

The 10-part Netflix series Maid, which is being exclusively shot in Greater Victoria, was filming near Prospect Lake in Saanich last month. (Photo courtesy Fred Haynes)
Province announces $150,000 towards film studio, fulfilling B.C. NDP promise

Investment to fund movie studio feasibility study at Camosun College

Tyson Ginter, 7, is proud of his latest Hot Wheels he recently received by Quesnel RCMP Const. Matt Joyce. (Photo submitted)
B.C. Mountie handing out toy cars to light up children’s faces

‘A lot of times it will be the only interaction they have with the police,’ says Const. Matt Joyce

Chief Public Health Officer Theresa Tam speaks during a technical briefing on the COVID pandemic in Canada, Friday, January 15, 2021 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Canada’s ICUs see near-record of COVID-19 patients last week as variant cases double

Last week, Canadian hospitals treated an average of 2,500 patients with COVID-19, daily, up 7% from the previous week

Most Read