The federal government has decided not to fund research into a rare fatal disease whose victims are mostly Cree children in Quebec.

The scientific name for the disease is Cree Leucoencephalopathy, a disease that means Cree white brain sickness. In Cree, it is known as Was Aksuun Kaka Chiwich Takinwich.

Doctors don’t know what causes it, but they do know it is fatal. And the number of cases is rising.

Almost all the cases so far are among the Quebec Crees, though there are a few among Manitoba Crees and one in Pointe-Bleue.

But the federal government will not fund research to learn more about it and figure out a cure. It says the disease doesn’t affect enough people to justify the expense.

It seems there are two parts to the brain, a white part and a grey part. In Cree children with the sickness, parts of the white brain are missing. No one at this time knows much about the disease.

Dr. Deborah Black, who has been working with the Crees for 16 years, said it is a genetic sickness, which means it is in the blood. She also said it can happen to any Cree and there are no known tests to determine who is a carrier and who is not.

At a public meeting on September 28 meeting in Chisasibi, Black explained that what mothers eat during the pregnancy and breast-feeding does not play any part in the disease, contrary to rumours.

Christopher and Sandra Cox of Chisasibi have a five-year-old
daughter with the disease. “They still don’t know how to treat people when they have it,” said Cox. He said they had another daughter who died of the disease.

“It was a girl who died at 10 months of the same disease. She was diagnosed at seven months. They knew something was wrong in Chisasibi and she was flown to Montreal. They told us here she wouldn’t have long to live. Of course, we were sad. She had a different form of the disease,” said Cox.

At the moment they have another daughter named Dani-Lee who is in Montreal’s Children Hospital. “Dani, the form she has allows her to live longer. Seventeen years is the age of the oldest one they know of,” said Cox.

The doctors haven’t said anything about the chances for Dani-Lee to her parents. “All they do is stick a feeding tube into her stomach when we comes to Montreal.”

Black said blood tests and autopsies will have to be done to research the disease, but they don’t know what they are looking for yet. Harris told The Nation a foundation may be set up to raise funds for research.

The funds for the research look like they will have to be raised by Crees at this point. Annie Gates, who works at the Cree School Board, said that when Jewish children were diagnosed with Tay-Sach’s disease it took a lot of time and money to research it.

Cox would like to find out who made this decision not to fund research and to ask them why they don’t think it’s worth it.

“I guess he doesn’t care about us,” Cox said. “But we are alive and we also want to stay alive.”