Makayla Sault's parents speak out about daughter's death

Chemotherapy took such a horrific toll on Makayla Sault's weak body that she begged her parents to take her out of treatment and try traditional medicine instead, the mother of the 11-year-old Ojibwe girl said Thursday.

Makayla, who had acutelymphoblasticleukemia, died last month after suffering a stroke. Her death sparked a national conversation on aboriginal people'sright to opt out of the health systemand is under investigation by the chief coroner's office.

Doctors gave Makayla a 72percent chance of survival even with an aggressive chemotherapy treatment, her mother, Sonya Sault, told an audience at McMaster University in Hamilton.

"She became so weak so she couldn't even stand or sit at times," she said.

• Makayla Sault, girl who refused chemo for leukemia, dies
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As CBC reported last May, during the 11 weeks of chemotherapy, Makayla experienced severe side-effectsthat landed her in the intensive care unit.

Saultsaid the treatment took a heavy physical and emotional toll on the little girl.

"Are you sure I'm getting better? Are you sure we're doing the right thing? I feel I am getting worse," she recalled her daughter asking.

Makaylasaid things like, "The chemo is going to kill me," the mother said, adding that the girl finally begged her parents to put an end to it.

I don't care if I'm going to die, I don't want to die weak and sick in a hospital. Makayla's mother, Sonya Sault, recalls her daughter's experience in chemo

"Mom, if you have the power to get me out of here, then you have to get me out of here."

Saultsaid she and her husband Ken thought about it.

"We know that chemotherapy is not easy for anyone, but forMakaylait was devastating," she said.

Makayla, she said, understood the "harsh reality of stopping chemotherapy," but she wanted to try traditional medicine.

"I don't care if I'm going to die, I don't want to die weak and sick in a hospital,"Saultremembersher daughter telling her.

After Makayla said she saw a vision of Jesus in the hospital, in which he proclaimed that she was healed, her familystopped treatment.

CBC reported last fall thatMakaylahadsuffered a relapse of leukemia.

'Our hearts are broken'

Sault spoke at an event organized by McMaster University's indigenous studies program in an effort to understand the problems between First Nation peoples and the health-care system.

"Our hearts are broken by the passing of our daughter," an emotionalSaultsaid before composing herself, withher husband by her side. The parents said they want their daughter to be remembered for more than cancer. She was a dancer, gymnast and lacrosse player,Saultsaid, and was "wise beyond her years."

The mother also said she wanted to clarify "misinformation in the media" about her daughter's treatment.

The medical staff atMcMasterChildren's Hospital threatened to get the authorities to apprehend the girl and her two brothers and force chemotherapy treatment upon her,Saultsaid.

Makaylastarted to feel better once the chemotherapy stopped,Saultsaid, but she didn't stop treatment altogether. She continued to receive treatment from her family physician, Dr. JasonZacks, as well as an oncologist atMcMasterHospital. She also received traditional medicine from a healer near her home on theMississaugasof the New Credit First Nation.

Makayla, J.J. attended Hippocrates Health Institute

Makaylaalso attended the Hippocrates Health Institute in Floridalast summer, two months after Brant Childrens Aid society decided she was not a child in need of protection.

'Neither went to Florida seeking 'alternative' medicine ... they found peace, a safe placethat is all.' Presentation at indigenous health conference on Makayla Saultand J.J.

SaultsaidMakayladidn't go to the Florida spa for cancer treatment, but to try out a new diet that might boost her immune system. As well,Saultsaid,Makaylagot to relax and be a kid again, soaking up the sun and swimming in the ocean.

In August, another First Nations girl also attended Hippocrates after leaving chemotherapy. Her identity is protected by a publication ban but in a court hearing about her case, her doctors testified that she had a 90 to95 per centchance of survival with chemotherapy.

A slide presented by indigenous studies professor Dawn Martin-Hill at theMcMasterUniversity conferencesaid, "Neither went to Florida seeking 'alternative' medicine they fled Canada. Fleeing threats of apprehension, incarceration, horrible acts of aggression.Inthe U.S. they found peace, a safe place that is all."

J.J.'smother told CBC News that her daughter was alsousing indigenous medicine while in the hospital, but from the start she was conflicted about the chemotherapy treatment.

"I knew I had wanted not to do it, but I had no alternative method so I could not stop chemo without an alternative method. So it took me a number of days to get everything I needed, you know to get the blood work faxed down [to Hippocrates], to get an appointment set up, and that was the 10 days of chemo."

Her mother told CBC News she made the decision to pull her daughter out of chemotherapyafter speaking to Clement."I went in to a waiting room and I did my consultation with Dr. Clement and it was very comforting.He was saying, 'Oh yes, no problem, we can help her. That was the day we stopped the chemo.'"

Clement denied speaking to J.J's mother when CBCasked him about it in December.

J.J.'s mother promised to share her daughter's story with the public after the deadline for appeal of the court decision expires on March 13.

A CBC investigation has since revealed thatClement has been ordered to stop practising medicineby Floridas Department of Health. TheFlorida authoritiesfound probable cause hewas treating two minor children with "possibly dangerous"therapies.

He's been fined for advertising himself as a medical doctor despite not being licensed to practice medicine in that state.

CBC reached out to Clement for comment butdid not receive a response.