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 East Kootenay Network of People Who Use Drugs is organizing a march to city hall on Wednesday, April 14, 2021, starting at 11 a.m. from the ANKORS office. (Corey Bullock/Cranbrook Townsman file)
Advocates to march for overdose awareness, calls for action

B.C. declared the overdose crisis a public health emergency five years ago

Deer will often eat fruit that has fallen from fruit trees. The City’s bylaw states that residents must keep their yards free from fallen fruit. (Corey Bullock/Cranbrook Townsman file)
Time to manage wildlife attractants, says City of Cranbrook

City reminds residents to keep yards free of fruit, pet food, food waste

Zeth Kindrachuk is pictured in action against the Trail Smoke Eaters in the Penticton pod, Saturday, April 10. Jack Murray photo
Bucks drop two to pod rivals

Cranbrook getting to know Penticton Vees, Trail Smoke Eaters, very well indeed.

TC Energy donated $2,000 to Cranbrook Fire and Emergency Services to be used towards the purchase of footwear for wildland firefighting situations. Photo courtesy City of Cranbrook.
TC Energy donates $2,000 towards specialized fire department gear

Cranbrook Fire and Emergency Services is the recipient of a $2,000 grant… Continue reading

The KEYSA  Mr. Mike's Junior Players of the Week were Molly Cain and Avery Swain (pictured with Coach Rob Niedermayer).
KEYSA Players of the Week and team standings

League finals set for next week

Conservative leader Erin O’Toole holds a press conference on Parliament Hill in Ottawa on Tuesday, April 6, 2020. Top Tory leaders of past and present will speak with supporters today about what a conservative economic recovery from COVID-19 could look like. THE CANADIAN PRESS/Sean Kilpatrick
O’Toole to vote against Conservative MP’s private bill on ‘sex-selective abortion’

Erin O’Toole said he supports a woman’s right to choose and will personally vote against the private member’s bill

A sign on a shop window indicates the store is closed in Ottawa, Monday March 23, 2020. The Canadian Federation of Independent Business is raising its estimate for the number of businesses that are considering the possibility of closing permanently. THE CANADIAN PRESS/Adrian Wyld
Small business struggling amid COVID-19 pandemic looks for aid in Liberals’ budget

President Dan Kelly said it is crucial to maintain programs to help businesses to the other side of the pandemic

The National Security and Intelligence Committee of Parliamentarians says that includes attempts to steal Canadian research on COVID-19 and vaccines, and sow misinformation. (AP Photo/Esteban Felix)
Intelligence committee warns China, Russia targeting Canadian COVID-19 research

Committee also found that the terrorist threat to Canada has shifted since its last such assessment

Part of the massive mess left behind in a Spallumcheen rental home owned by Wes Burden, whose tenants bolted from the property in the middle of the night. Burden is now facing a hefty cleaning and repair bill as a result. (Photo submitted)
Tenants disappear in the night leaving Okanagan home trashed with junk, feces

Spallumcheen rental rooms filled with junk, human and animal feces; landlord scared to rent again

Parliament Hill is viewed below a Canada flag in Gatineau, Quebec, Friday, Sept. 18, 2020. A new poll suggests most Canadians are feeling more grateful for what they have in 2020 as a result of COVID-19 pandemic.THE CANADIAN PRESS/Sean Kilpatrick
Canada’s greenhouse gas emissions increased slightly in 2019: report

2019 report shows Canada emitted about one million tonnes more of these gases than the previous year

Dr. E. Kwok administers a COVID-19 vaccine to a recipient at a vaccination clinic run by Vancouver Coastal Health, in Richmond, B.C., Saturday, April 10, 2021. THE CANADIAN PRESS/Jonathan Hayward
B.C. to register people ages 40+ for COVID-19 vaccines in April

Appointments are currently being booked for people ages 66 and up

Interior Health improves access to mental health supports amid COVID-19 pandemic. (Stock)
Interior Health connects people to mental health resources amid COVID

310-MHSU line receives positive feedback in early months of rollout

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

Most Read