& # 39; We are always there & # 39; | CBC News

Gussie Bennett, a popular teenager and outgoing from Nain, N.L., went daily to the community rink after school to ask him if he needed to replace the goalkeeper for the lower levels in minor hockey.

He became ill in early 2017 while spitting blood, but the local clinic decided that he would be fine. Towards the end of this year, Gussie started to feel sick again.

The persistent cough during the first months of 2018 has worsened and it has weakened. His family feared that something was really wrong in early March, when the normally active boy started to stay more and more in the house.

"Her body started to weaken, especially her feet," recalls Silpa Suarak, Gussie's sister.

She thought it was just difficult at first, "but in reality, her feet were sore, her legs, and the rest of her body ached.

"When he was brought to the clinic, they then noticed that he was really sick."

Two days later, on March 18, 2018, he died at the Janeway Children's Hospital in St. John's. He was 14 years old.

Nunatsiavut, the Labrador Inuit region, has the highest tuberculosis rate in Canada – 248 cases per 100,000 population. The average rate in Canada is about five cases per 100,000 population. Nain and Hopedale, on the north coast of Labrador, are the two communities most affected by the disease.

Tuberculosis is an infectious disease caused by a bacterium that spreads in the air when a person with active disease coughs or sneezes. It usually attacks the lungs, but can also affect other parts of the body, including the lymph nodes, kidneys, urinary tract and bones.

The highly communicable disease with sometimes subtle symptoms can spread quickly before anyone realizes that an epidemic is going on. In very tight Inuit communities, like Nain, TB can become very difficult to contain. Symptoms may suggest a regular cold or flu at first.

Gussie's presence is still felt in the family home. The living room has become a shrine to the memory of a lost son. His glbades are on a table with a lock of hair. A giant card signed by Gussie's friends at the Youth House is glued to the wall with candles and painted portraits of Gussie by friends. Images of Gussie are lined up in the room: at school, with family, hunting, hockey; his face smiling again and again.

The face of Gussie's mother, Katie Suarak, is a face that has seen grief; she says that she cries every day for her son. Still, she is friendly and welcoming, and her face lights up when she talks about Gussie – good times, and there have been many. But when she talks about the end of her son's life, just a year ago, the pain on her face is clear.

"It's so devastating, it's so difficult, what I experienced with Gussie was so hard, it still hurts me inside."

Katie traveled with her son to Goose Bay and then to St. John's, 1,000 kilometers from home, and stayed by her side as medical staff tried to stabilize her worsening health. She told her son, "Everything will be fine, Gus," before the doctors seduce him to rest his body and protect his brain.

Lungs unable to provide enough oxygenated blood to his body, Gussie had a heart attack and died. It was only after Gussie's autopsy that doctors in St. John's confirmed that it was tuberculosis.

"I was so lost, my mind was lost, I cried – all alone."

Gussie's father, Jim Bennett, saw his son for the last time as he was leaving for his two-week shift at the nearby Voisey's Bay nickel mine. Bennett repeatedly asked Gussie to go to the local clinic just a few minutes walk away.

Bennett was prevented from returning home and could never see Gussie before his death.

"It's something I'll always have to live with, that I'll never come back to see my boy."

One of the most difficult aspects of treating the disease is detection. A person exposed to TB will carry the disease for the rest of his life. She can remain dormant and never cause symptoms, but when this person puts his immune system to the test, the disease can become active. Once active, tuberculosis is very contagious.

After Gussie's death, the entire family and all those with whom he had spent time had to be tested for TB. His brother Sonny tested positive for the disease and was quarantined.

His older sister, Silpa Suarak, was six months pregnant at the time. Although her test became negative again, after explaining to her daughter and son what had happened to their favorite uncle, she had to explain to her children that they had also been tested positive for TB.

Children had to be quarantined in case tuberculosis became active before the drug started to work.

"There were no symptoms," says Silpa. "When you get TB, you do not even know it, I did not even know that my kids had TB until we were asked to do the test."

Labrador Grenfell Health quarantined the family for two weeks at a hotel in Happy Valley-Goose Bay, nearly a two-hour flight south of Nain, to get near the doctors. Although they are separated from their friends and family, they have been able to keep in touch via social media and have visitors who should sit outside in the lobby and talk through the door.

They spent the Easter holidays, a big party in Nain, inside the hotel.

Silpa was allowed to go out to get chocolates for her children.

"My children did not have baskets, but we had plates with Easter designs for their baskets and when we got up in the morning, there were eggs and objects around the room. ;hotel."

When the children were finally released, they went to the first store where they could find something to do.

"We were so happy to go out and I think it was the next day, or two days after, that we were allowed to go home to Nain," she says.

"It was just comforting to come back."

Life began to return to normal for Nain for Silpa, but the fear of tuberculosis still held dear for the baby she was carrying. Three months after Gussie's death, his son Willie Boy was born healthy and strong.

When Julius Dicker, 64, was growing up in Nain, the boats would come back every two years to test for TB. If a person was HIV positive, they could be taken for treatment for months or years, sometimes never to return.

On March 8, Prime Minister Justin Trudeau apologized to Iqaluit for the federal government's treatment of tuberculosis in the 1940s and 1960s and urged the government to help families find information about people living with the disease. dear ones returned.

"The stigma of TB itself still exists," Dicker said.

"Once you're identified as having TB, the rest of the community members fled you a little bit, they were afraid to talk to you or even approach you, thinking that they were there." They would catch, not knowing how the disease was spreading itself. "

Dicker is the angajukKâk, a role similar to that of mayor of the government of the Inuit community of Nain. He has worked with government and health officials to organize TB screenings and community meetings on TB.

Like many others after Gussie's death, Dicker, along with members of his family, tested positive for TB and completed medical treatment.

He believes that Nain needs more than just medicine.

"This disease can appear at any time, and we are currently trying to eliminate it and return to a healthy community, but to have a healthy community, you need healthy living conditions," he said. -he declares.

According to the World Health Organization, overcrowded and poorly ventilated living environments are direct risk factors for TB transmission and undernutrition is an important risk factor for the development of an active disease .

A survey conducted in 2013-2014 found that nearly 80% of Nain households were food insecure, which meant that they limited their food choices and the amount they were able to eat. bought or, in extreme cases, skipped meals because of their affordability.

Nain is also facing a housing crisis exacerbated by a growing population, short construction seasons and high costs for material transportation and site preparation. The Nunatsiavut Government pbaded its first housing bill last week, giving it the authority to manage federal funding to develop a housing strategy, aimed in part at eliminating TB by 2030.

According to Mr. Dicker, in Nain, extended families live in single-family homes, sometimes up to 20 people in a one- or two-bedroom home. If a person is infected, the whole household will have to be tested, as well as the networks and connections of each person living there.

With this outbreak, a series of community meetings determined that the best thing to do was bring in dedicated health professionals and screening materials – such as an x-ray machine – into the community. According to Mr. Dicker, at present, more than 70% of the community has been examined.

Silpa says that her community has been there for her and her family. Although she had to leave Nain for treatment, she says support from her hometown helped her family through this difficult time.

"I'm doing my best to focus on the positive side of anything, really," she says.

"I feel lucky that we have access to these services and that my children are always there, even though we lost my brother, their uncle, we are still here."