Two special little girls inspiration for May 9 fair raising funds for brain cancer research
By Olivia Bradbury, Local Journalism Initiative Reporter
A craft fair in Harbour Grace May 9 will raise money for research into DIPG, a type of pediatric brain cancer. The event is being held in memory of two girls who passed away from the disease and is being organized by their mothers.
Diffuse intrinsic pontine glioma (DIPG), is a rare type of brain tumour of the pons, part of the brain stem. It affects about 30 children in Canada each year. The odds of two children within 15 minutes of each other having it are low, and yet, in Conception Bay North, that is exactly what happened. Trinity Ellsworth of Carbonear and Willow Lanto of Tilton were both diagnosed with the tumour a month apart in 2021. This led their mothers, Sandra Barfoot and Tammy Ellsworth, to become acquainted.
Treatment options for DIPG are poor, especially in Newfoundland, say the moms. The girls were not able to receive radiation treatment simultaneously at the Health Sciences Centre, with Willow having to wait until Trinity was finished first. When they had to fast before their treatment, Willow had to go without food for a longer period of time.
Ellsworth said she has spoken to parents from other provinces whose children had more options when it came to treatment. “I think it’s probably just that they don’t know anything about it here,” she said.
Ellsworth said there has been no overall progress in DIPG treatment since astronaut Neil Armstrong’s daughter was diagnosed over 60 years ago. “Her treatment back in 1960 is the same as what they’re doing today,” said Ellsworth, arguing it shows how underfunded DIPG research is.
Trinity died at age six in 2022, eight months after her diagnosis. Willow lived for 26 months after her diagnosis, surpassing what doctors had predicted, and passed away at the age of five in 2024.
Ellsworth had not thought she was going to be able to have a child but gave birth to Trinity while in Fort McMurray. They returned to Newfoundland because of the wildfires there. “I take it that we were meant to be home,” said Tammy, “otherwise the family wouldn’t have known her.”
Trinity had a group of friends and spent a lot of time outside with her father. Tammy eventually got pregnant again, and her son was born three weeks after Trinity passed.
“Willow was an outgoing child like any other child,” said Barfoot. “She played with her Barbies, loved her Frozen, dance parties. She’d light up a room when she walked in. That’s just the type of attitude she had. And it was her way.”
“They were normal little girls,” said Ellsworth, “loving life, had the best little families, and… that’s it. There are no signs and symptoms right up until you get diagnosed.”
Both moms say there were some things, like vision issues, nausea, and a sudden fear of heights that they could attribute to DIPG, but only in hindsight.
While the girls were sick, many people gave their parents money as they were not able to work as before. Ellsworth received more donations after Trinity passed. She told them not to donate to the memorial fund, but towards buying a cuddle bed for the hospital. The wider bed allows a parent or sibling to lay next to a palliative patient. When the girls were receiving treatment, the Health Sciences Centre had only one cuddle bed.
At a cost of $18,000, Ellsworth had received more than enough money to buy one for the hospital. She wasn’t sure what to do with the excess funds as there is no DIPG foundation. Eventually, she got in touch with Brain Cancer Canada.
“I said, ‘If you’re willing to help do research and invest into (studying) DIPG, I have some money for you.’ So that money went there, and then from there, it was just kind of like a fire got lit. ‘We need to do more. We need to do better.’”
Barfoot, who has experience as a vendor at craft fairs, suggested they do something in that vein. Thus, the DIPG Craft Fair was born.
In 2023, Ellsworth and Barfoot organized the first annual DIPG Craft Fair and have held it every year since. All proceeds go to Brain Cancer Canada in aid of DIPG research. There are typically 30 or more vendors selling everything from baked goods, toys, jewelry, and clothing to knitted and other goods. Ellsworth said they usually raise between $3,500 and $5,000.
The fourth annual DIPG Craft Fair will take place at St. Francis School in Harbour Grace on May 9 from 10 a.m. to 4 p.m. Admission is a $2 donation to DIPG research. There will also be a bake sale, a door prize, and a ticket prize consisting of products donated by vendors.
Trinity Ellsworth and Willow Lanto