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'My entire life has flipped': Canadian website helps connect terminally ill young people

Catherine Wreford Ledlow, who was diagnosed with terminal brain cancer five years ago, is helping other young people with diagnoses like hers open up about their experiences.

Online platform offers insights to others facing terminal diagnoses

Catherine Wreford Ledlow smiles as she teaches a children's musical theatre class in Winnipeg. The 38-year-old mother of two is one of 10 young Canadians diagnosed with a terminal illness who share their stories on a new website designed to help other young people with terminal diagnoses. (Walther Bernal/CBC)

Catherine Wreford Ledlow, who was diagnosed with terminal brain cancer five years ago, is helping other young people with diagnoses like hers open up about their experiences.

The 38-year-old Winnipegger is one of 10 Canadians featured on an online platform created in Canada that's dedicated to helping young adults with advanced illnesses by connecting them with other young people in the same situation.

Wreford Ledlow, a former Broadway dancer who teaches musical theatre to children, was given two to six years to live when she was diagnosed.

"I just remember them showing me that huge tumour and I just started crying. My entire life has flipped completely upside down," the mother of two said.

"I didn't know who to call, and nobody had called and said call this person, nothing … so there was such a huge gap."

Catherine Wreford Ledlow, 38, was diagnosed with terminal brain cancer five years ago and was given two to six years to live. (Walther Bernal/CBC)

After surgery, Wreford Ledlow had to learn to speak again. She lost her hair, her relationships changed, and she had a new outlook on life and death.

On the website livingoutloud.life — which officially launched at a youth cancer conference in Sydney, Australia, last week — Wreford Ledlow and others tell their stories through video and the printed word.

Wreford Ledlow hopes to help others by letting people know about the things she needed help with, including the difficulties of talking about death with her family.

"To help people know that they don't have to be alone and just to normalize people talking about it, because so many people ignore it and then then they just die," she said.

"I want people to know I'm not going to let it take away my life. I'm still doing what I love and I love doing it."

The site, funded by the Canadian Partnership Against Cancer and the Thomas Sill Foundation, was developed by young adults and teens for young adults and teens, their families and health-care providers to find information that hasn't been easily available, said Simone Stenekes, who is part of the team that launched the website.

Simone Stenekes, a clinical nurse specialist with the Canadian Virtual Hospice, is on the team that launched livingoutloud.life. (Walther Bernal/CBC)

"You realize there's this huge gap of information for these teens or these young adults, because they're not old and they're not young," said Stenekes, a clinical nurse specialist with the Canadian Virtual Hospice.

"These young adults and teens maybe don't even have their health-care team talking about the fact they're going to die, and yet they're really afraid of that."

The platform features discussions about relationships, sex and fertility, self, daily life and decisions.

"We specifically wanted to highlight information around life-limiting illness and some of the discussions that happen about advance care planning to really bring that forward, because that's not done very well in the health-care environment," said Stenekes.

"It's honest, it's raw and it just shows the real things and struggles that young adults and teens that are living with life-limiting illness are dealing with."

Jayda Kelsall, 35, who has been diagnosed with a rare form of cancer, hopes to help others through her videos on the website. (CBC)

When Jayda Kelsall, 35, was diagnosed with a rare form of cancer called peritoneal mesothelioma, she felt alone, she says.

In the clips she is featured in on the website, Kelsall talks about trying to get her life back on track, including relationships with partners and friends.

She wants to help others like her and their loved ones.

"When you're in your 20s and 30s, that's not where your friends are. Finding support of other young adults has really changed the way I've dealt with my own illness," she said.

"I really hope at least one person connects with at least one thing I've said, and if that happens, it's worth it."

Watch:

'My entire life has flipped': Canadian website helps connect terminally ill young people

4 years ago
Duration 2:38
Catherine Wreford Ledlow, who was diagnosed with terminal brain cancer five years ago, is helping other young people with diagnoses like hers open up about their experiences.

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