Patients and families tied to potential mystery brain disease speak out about neurologist Dr. Marrero

MONCTON, N.B. — I recently travelled to my hometown of Moncton, N.B., to report on a potentially mysterious brain disease that has people talking and very concerned.

I spent some time with Bonnie Vautour. Her mom Sylvia died this spring and had been part of a cluster of 48 diagnosed with an unknown neurological syndrome. Vautour remembered her mom as being a real spitfire, telling me, “She was so full of life, full of laughter and loved her grandkids. She played baseball almost her entire life and did a lot of stock car racing.”

Vautour’s mom had a rapid decline, initially showing signs of confusion and memory loss. In just months, she was referred to neurologist Dr. Alier Marrero, who included her in the “cluster.” I asked Vautour about Dr. Marrero and she said: “You couldn’t ask for better bedside manners. Very, very friendly. Just super. You couldn’t ask for a better neurologist.”

Over the course of our investigation, we spoke to many other patients and families about their experience with Dr. Marrero.

Carol Clark, who is 77 and living with the unknown syndrome, said “as far as I’m concerned, he’s really my neurologist and will always be my neurologist.”

Steve Ellis, whose 64-year-old father Roger is a patient of Dr. Marrero. He says, “He recognized the trends, and he’s the one that did the right thing.”

Staci whose stepdaughter, Gabrielle Cormier, is one of the youngest patients said, “It’s really important that we speak for her and we let people know how appreciative she is of Dr. Marrero and his team.”

While patients and their families spoke highly of Dr. Marrero, the government has distanced themselves. Dr. Marrero was not included in briefings by the province on June 3 and again on Oct. 27.

This weeks’ briefing came as neuropathology reports tied to those who died in the cluster were made public.

W5 spoke exclusively to the neuropathologist who wrote those reports, Dr. Gerard Jansen. He told me “our work is to give a diagnosis with as much certainty as we can. And to also say what is not there if we don’t find something .”

Dr. Jansen found that all of those he investigated died of normal brain diseases.

He wanted to express this to the families: “I’m not saying that people do not suffer or there is no disease. Absolutely not. These people, all of these eight people, had a disease. It is just that misclassifying them as having a new mysterious disease was not right.”

We asked Dr. Marrero if he had seen the reports and he said, “I have seen some results and would not like to comment on them. They were reviewing their autopsies; so I don’t know exactly what is happening.”

For Vautour, she’s just hoping for some closure, and told us finally she expects to receive it this week from Dr. Marrero.

“Mum’s already passed, it’s been over five and a half months and we’re just getting word of the autopsy results. To me, it was way too long. Way, way, way, way too long.”

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