Makayla Sault, girl who refused chemo for leukemia, dies

Makayla Sault, the 11-year-old Ontario First Nation girl who refused chemotherapy to pursue traditional indigenous medicine and other alternative treatments, has died.

The girl died Monday after suffering a stroke Sunday.

"Surrounded by the love and support of her family, her community and her nation … Makayla completed her course. She is now safely in the arms of Jesus," her family said in a statement published by the Two Row Times.

The girl’s case made national headlines and ignited a debate about the validity of indigenous medicine and the rights of children to choose their own treatment. The Saults are from the New Credit First Nation near Caledonia, Ont. 

• First Nations girl chooses traditional medicine over chemo
• Makayla Sault, earlier First Nation child who refused chemo, relapsed: doctor
• Makayla Sault's case raises questions about child welfare laws

Makayla was given a 75 per cent chance of survival when she was diagnosed with acute lymphoblastic leukemia (ALL) in March. She underwent 11 weeks of chemotherapy at McMaster Children’s Hospital in Hamilton.

Her mother, Sonya Sault, said Makayla experienced severe side-effects and at one point ended up in intensive care.

After Makayla said she had a vision of Jesus in the hospital, she wrote a letter to her doctors asking to stop treatment.

"I am writing this letter to tell you that this chemo is killing my body and I cannot take it anymore."

She left chemotherapy treatment while in remission to pursue alternative and traditional indigenous medicine.

"Makayla was on her way to wellness, bravely fighting toward holistic well-being after the harsh side-effects that 12 weeks of chemotherapy inflicted on her body," the family statement read. "Chemotherapy did irreversible damage to her heart and major organs. This was the cause of the stroke."

Makayla exercised her rights, says children's aid society

Although her family claims her death was due to chemotherapy, in September, a McMaster oncologist testified at a  hearing on a similar case of a First Nations girl refusing cancer treatment that Makayla had suffered a relapse. The doctor also testified that there are no known cases of survival of this type of leukemia without a full course of chemotherapy treatment.

• CBC readers share their thoughts on Makayla's life and death

When asked to comment on Makayla's death Tuesday, Ontario Minister of Children and Youth Services Tracy MacCharles​ said she learned of the girl's death "with great sadness."

"Her precocious joy and optimism left a compelling impression on all she touched," MacCharles said in a statement.

While she would not address the specifics of Makayla's case or the question of whether the ministry failed in its responsibility to protect the child, MacCharles said that "all children in Ontario have the same right to protection and access to health care." 

Makayla was a wonderful, loving child who eloquently exercised her indigenous rights … and those legal rights provided to her under Ontario's Health Care Consent Act.- Andrew Koster, Brant Family and Children's Services

"There are times when parents' or guardians' wishes for treatment conflict with those of doctors," she said. "In these cases, we rely on the expertise of the local children's aid societies to investigate concerns and determine if intervention is needed."

The children's aid society that handled Makayla's case, Brant Family and Children's Services, issued its own statement Tuesday.

"Makayla was a wonderful, loving child who eloquently exercised her indigenous rights as a First Nations person and those legal rights provided to her under Ontario's Health Care Consent Act," said executive director Andrew Koster. "The parents are a caring couple who loved their daughter deeply."

A visitation for Makayla will be held at New Credit Fellowship Centre on Thursday from 10 a.m. to 5 p.m. A celebration of life service will be held Friday at 11 a.m. at the Six Nations Community Hall. There will also be two evening services for Makayla at the New Credit Fellowship Centre, where her parents are pastors, on Wednesday and Thursday at 7p.m.

Attended 'life transformation program'

When Makayla decided against continuing chemotherapy, the hospital referred her case to Brant Family and Children's Services. After a brief investigation, it decided Makayla was not a child in need of protection and that it would not apprehend her to return her to treatment.

In an interview with CBC News in May, before the agency closed its investigation, Koster said, "For us to take her away, to apprehend and place in a home with strangers, if that's the case, if there aren't any relatives, when she's very, very ill — I can't see how that would be helpful." 

“I think people much more knowledgeable than ourselves need to be involved to look at what types of traditional medicines are being used, how does it fare up to some of the chemo treatments," said Koster.

In July, Makayla travelled to the Hippocrates Health Institute in Florida and took its three-week "life transformation program." A CBC investigation revealed that Hippocrates is licensed as a "massage establishment," and is being sued by former staff who allege the company's president Brian Clement is operating "a scam under Florida law" and practising medicine without a licence. 

Makayla touched everyone she knew, said Peter Fitzgerald, president of McMaster Children's Hospital, in a statement.

"Her loss is heartbreaking," he said, extending his condolences to her family.

Precedent-setting case in Ontario court

Makayla's death comes a few months after an Ontario judge ruled in an unprecedented case of another First Nations girl who also refused chemo.

The girl, whose identity is protected under a publication ban, was diagnosed with acute lymphoblastic leukemia​ in August. Doctors at McMaster Children's Hospital gave her a 90 to 95 per cent chance of survival.  

After 10 days of chemotherapy, she and her mother left McMaster to seek treatment at the Hippocrates Health Institute in Florida.

• First Nations girl's family rejects chemo, hospital goes to court to force treatment
• First Nation family's refusal of chemo a precedent-setting case, expert says

The mother of the 11-year-old girl, who cannot be identified because of a publication ban, says the resort’s director, Clement, told her leukemia is "not difficult to treat."

Clement, who goes by the title "Dr.," denied telling the mother that.

In an interview with CBC's Connie Walker, Clement said, "When we educate them they take care of themselves," he said, before shouting, "You're a liar. Get off the property." 

In an interview with CBC News, her mother said, "This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work."

The girl's mother said her daughter received cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies at Hippocrates. 

Judge Gethin Edward rejected the application from the Hamilton hospital that would have seen the Children's Aid Society intervene in Makayla's case.