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

Gus doing a little hard time before reuniting with his owners. Photo: Trail RCMP
Trail RCMP report cheery conclusions to missing cases

Media brief from the Trail and Greater District RCMP

Tim Schewe is a retired constable with many years of traffic law enforcement. To comment or learn more, please visit DriveSmartBC.ca.
Drivesmart BC: Rules around bicycle lanes

The lane is often painted green to distinguish it from lanes intended for motor vehicles.

“It’s never too early to start your own Advance Care Plan, but sometimes it can be too late,” says the BC Hospice Palliative Care Association. Photo: Joanna Nix-Walkup on Unsplash
Start the conversation on April 16, National Advance Care Planning Day

Hospice advises to communicate your wishes for peace of mind

FILE — In this March 31, 2021 file photo, a nurse fills a syringe with a dose of the Johnson & Johnson’s one-dose COVID-19 vaccine at the Vaxmobile, at the Uniondale Hempstead Senior Center, in Uniondale, N.Y. The U.S. is recommending a “pause” in administration of the single-dose Johnson & Johnson COVID-19 vaccine to investigate reports of potentially dangerous blood clots. In a joint statement Tuesday, the Centers for Disease Control and Prevention and the Food and Drug Administration said it was investigating clots in six women in the days after vaccination, in combination with reduced platelet counts. (AP Photo/Mary Altaffer, File)
72 new COVID-19 cases in Interior Health

This brings the total number of cases in the region to 9,666 since the pandemic began

A screenshot from a Nuu-chah-nulth healing song and performance created in collaboration between Hjalmer Wenstob and Timmy Masso. (Screenshot from YouTube)
WATCH: Tla-o-qui-aht First Nation brothers produce COVID-19 healing song

Hjalmer Wenstob and Timmy Masso share dance and inspiration.

Health Canada headquarters in Ottawa. (Sean Kilpatrick/The Canadian Press)
Health Canada releases guidelines for reducing COVID-19 transmission at home

Improve indoor air quality by opening up your windows and doors, among the encouraged ventilation measures

Flow Academy is not accepting membership applications from anybody who has received a dose of the vaccine, according to a password-protected membership application form. (Submitted image)
B.C. martial arts gym refusing patrons who have been vaccinated, wear masks

Interior Health has already issued a ticket to Flow Academy for non-compliance with public health orders

MP Todd Doherty took to Facebook after his family recently received threats. (Todd Doherty, MP Facebook photo)
‘I don’t run and I don’t hide’: Cariboo MP says RCMP probing threats made against family

Todd Doherty has also notified House of Commons Protective Services

Two men walk past a sign on Main Street in downtown Vancouver, B.C., Monday, April 5, 2021. THE CANADIAN PRESS/Jonathan Hayward
Calls for government transparency in COVID data continue as B.C.’s 3rd wave wears on

Social media, where both information and misinformation can spread like wildfire, has not helped

The music video for “Green and Blue” featured a Willington Care Centre in Burnaby as well as some of the volunteers and employees. (Screenshot/Todd Richard)
‘Green and Blue’: B.C. country musician releases tribute song for front-line workers

Richard’s new single has been viewed more than 3,000 times on his YouTube channel

An unidentified B.C. man said, in a human rights complaint, that he was refused a contract job after refusing to wear a mask when asked to by an on-site manager. (Unsplash)
Religious B.C. man lodges human rights complaint after fired for refusing to wear a mask

Worker’s claim that ‘to cover up our face infringes on our God-given ability to breathe’ dismissed by B.C. Human Rights Tribunal

This 2013 Dodge Ram 1500 was stolen from Black Creek Motors at approximately 2 a.m. Sunday, April 11. Photos via blackcreekmotors.com
VIDEO: B.C. car dealer posts clip of thieves towing a truck right off his lot

Video shows one white truck towing another off Vancouver Island lot

Most Read