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Ontario First Nations girl taken off chemotherapy has died

First Nations supporters stand outside an Ontario court after judges delivered a verdict in the case of an 11-year-old girl from Six Nations with childhood leukemia.

GLENN LOWSON/The Globe and Mail

One of the two Ontario native girls who were removed from chemotherapy by their parents last year and given an aboriginal therapy to treat their cancer has died.

Makayla Sault, an 11-year-old member of the Mississaugas of the New Credit First Nation, passed away at home on Monday afternoon.

"She didn't die of cancer," said Chief Bryan LaForme, who is acting as a spokesman for the family. "Her immune system had been badly affected by the radiation that she had, so she succumbed from a stroke."

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Makayla, who suffered from acute lymphoblastic leukemia, stopped chemotherapy in May because of the side effects of the drug. She had told her parents, Ken and Sonya Sault, who are pastors, that Christ had appeared in her hospital room to tell her she was healed.

Mr. LaForme said her parents are holding up well considering their loss and do not regret taking Makayla off chemotherapy.

"From Day One they have never regretted the decision," he said. "As a matter of fact, they wish that they had never even gone through the chemo in the first place."

Her case is remarkably similar to that of J.J., another 11-year-old girl with the same disease who lives on the nearby Six Nations of the Grand River reserve and whose mother took her off chemotherapy in August in favour of traditional healing. Both girls were treated at the Hippocrates Health Institute, a private holistic centre in West Palm Beach, Fla.

Doctors at McMaster Children's Hospital in Hamilton went to court to force J.J. back into chemotherapy but the judge refused, saying the Constitution protects her mother's right to treat the child with traditional aboriginal medicine.

J.J.'s mother says the girl appears to be doing fine and recent tests results have been good.

Makayla died on the same day that an editorial in the Canadian Medical Association Journal (CMAJ) said the country's health-care system must respect aboriginal healing traditions, which are deeply valued ancestral practices.

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Authors Lisa Richardson, an internal medicine specialist who is a leader of the University of Toronto's office of indigenous medical education, and Matthew Stanbrook, a respirologist and deputy editor of the CMAJ, wrote that many indigenous Canadians feel unwelcome or unsafe in regular medical institutions.

"To make medical treatment acceptable to our aboriginal patients, the health-care system must earn their trust by delivering respect," they wrote. They pointed to J.J.'s case saying, although some people took issue with the judge's ruling, "it appears to have been a thoughtful decision addressing a complex area of law."

Had the court forced J.J. to undergo the chemotherapy, the editorial said, the mistrust and anger that might have ensued within her community could have compromised the doctors' future ability to provide her and other aboriginal people with optimal care.

Dr. Richardson said in a telephone interview that she was compelled to write the editorial because the bigger picture of why so many aboriginal patients have poor experiences in the health-care system was being lost in the media coverage around the case of J.J.

News reports in November said Makayla was critically ill. Mr. LaForme said that was not true. "I saw her before Christmas and she was just another young person waiting for Christmas," he said.

But her health did not hold up. She was recently taken to the hospital when her illness took a turn for the worse. The doctors said they could provide more treatment but Mr. and Mrs. Sault and Makayla jointly decided against it and returned home on Sunday, Mr. LaForme said.

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"The parents had passed to me that they brought her home and she was quite content to be home," he said. "Some of the relatives were coming in and, according to the parents, she waited until all of the relatives were there before she passed."

Peter Fitzgerald, the president of McMaster Children's Hospital, said the loss of Makayla is heartbreaking."Everyone who knew Makayla was touched by this remarkable girl," he said. "Our deepest sympathy is extended to Makayla's family."

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