'The public deserves to know about another death': N.B. woman says her mother died of mysterious brain disease

A woman from New Brunswick who says her mother was identified to have the mysterious neurological disease is questioning why the province has not made it public.

It has been one month to the day since Bonnie Vautour’s mother, 77-year-old Sylvia Curtis, died after contracting the unknown brain syndrome.

She says her mother began showing symptoms last December, but quickly deteriorated in a matter of months.

“She couldn’t talk, walk, eat or nothing, so it puzzles me how fast she went down within four months because she was a very active person, she played softball all of her life,” said Vautour.

Still grieving the loss of her mother, Vautour was surprised to hear that her mother’s death wasn’t mentioned during the province’s public update last Thursday.

She says her mother’s death has still not been acknowledged publicly as one of the individuals who has died from this mysterious disease.

“I think the public deserves to know about the seventh death and maybe there’s even more. We don’t know,” said Vautour.

As of Tuesday, the public health website on the unknown syndrome still shows six deaths.

After several brain scans and tests ruled out other diseases, Vautour says Dr. Marrero told her that her mother had the unknown syndrome. In February, she was no longer able to eat, walk or speak. It wasn’t until May when her mother was transferred to palliative care where she died on May 8.

Her mother Sylvia grew up in Moncton and the Shediac area. She was an avid baseball player and spent a lot of time outdoors. But her daughter is still left wondering what the cause of this disease is and whether her other family members will get it.

Vautour and her brother are hoping to receive their mother’s autopsy results within the next four months. Once the autopsy is complete her family plans to scatter her mother’s ashes on a baseball field.

The team of doctors investigating the disease is currently exploring all potential causes, including environmental factors, food, and animal exposures.

Steve Ellis’ father, 63-year-old Roger Ellis of Bathurst, N.B., was suddenly presented with symptoms two years ago.

Ellis recently wrote a letter to the Minister of Health, Dorothy Shephard, and Premier Blaine Higgs, asking that they commit to holding regular public updates on the unknown disease, as required.

"I said in my letter to do a briefing when someone dies. They do that with COVID, I think it's only fair to do it for this disease and when there's something to update, whether that’s case numbers or an important part of the investigation."

The New Brunswick government’s website recently added in a Q&A section, but Ellis says he would like to see more information provided as it becomes available.

“What upsets me about the question section was that they said that all future updates will be on the website,” said Ellis. “I’m not going to stand for that.”

He also wants to have the age brackets shared of those who have been identified to have the disease, and for public health to show when they have provided updates on their website.

At this time, the website only shows the age range being investigated which is from 18 to 85.

Forty-eight cases are being investigated by the province. So far, 39 have been confirmed and nine are suspected cases. Six people have died.

“It needs to be treated with the same importance as COVID" said Ellis.

On Tuesday, the health minister said she cannot confirm another death.

"The steering committee took what was put in place just for this purpose," said Shephard. "I think that it's really important that we allow them to do their work and I don't think that you will see anything added until they've gone through the first 48 that they have and then they will move onto other potentials."

Last week, New Brunswick’s health minister announced the creation of an oversight committee that will assist in overseeing the investigation into the neurological disease. However, there was no promise to provide regular updates.

The committee will be working with public health to find similarities between the cases and speed up the process that will lead to a diagnosis or a cause.

Public health is currently in the process of conducting questionnaires with confirmed cases and their family members. A process that the minister of health says could take up to eight weeks.

According to the public health website, “In some cases, additional information is needed to determine if the cause of death was a result of this syndrome."