“Everyone who knew Makayla was touched by this remarkable girl. Her loss is heart-breaking. Our deepest sympathy is extended to Makayla’s family.”
Peter Fitzgerald, President of McMaster Children’s Hospital
Canada. Ontario.
Sonya and Ken, Mom and Dad, are pastors. They arrange and promote community events – yard sales, fundraisers, food, music, elders, children… They send out positive thoughts from Facebook. God. Captioned optimism. ‘SHIFT your focus from the problem, to the problem SOLVER!!! — :) feeling blessed.’
In between it’s date nights, movies with the kids, holidays to the soaring Eagle resort in Michigan and a full life lived on the rez – the Mississaugas of the New Credit First Nation reserve.
Their 11-year-old daughter Makayla. One of three. Makayla was into gymnastics, dancing, lacrosse, singing, activities and action at community events as part of the Chosen Kidz team.
Makayla died on 19th January, having suffered a stroke the previous day.
It was almost a year since she had been first diagnosed. She had Acute Lymphoblastic Leukaemia. This is the most common childhood cancer, although further complicated in her case by the presence of the Philadelphia Chromosome.
January – April 2014. McMaster Children’s Hospital, Hamilton, Ontario.
Makayla’s eleven weeks of induction chemotherapy had had nasty side effects, later listed in a New Credit press release as including: “septic infections, organ damage (which is likely permanent), severe weight loss, vomiting, mouth sores, curvature of the spine, dangerously high levels of toxicity, and devastating pain, nausea and exhaustion.” Her parents later said it had also doubled her heartrate.
Makayla and her family asked for a break. Her symptoms had gone into remission during the treatment. With treatment she had a 75% survival chance.
Kenny N Sonya Sault [Facebook], 19th April 2014:
JOIN US SUNDAY AT 10:15AM NCFC, 2829 FIRST LINE ROAD,BRING THE FAMILY! HEAR MAKAYLAS POWERFUL TESTIMONY OF HOW JESUS CAME TO HER IN THE HOSPITAL ROOM!!!!! ALL CHOSEN KIDS WILL RECIEVE A SPECIAL GIFTBAG. EMPOWERING THIS GENERTATION FOR THE GREATER [sic].
During the break the Sault family informed McMaster hospital that they wished to cease chemotherapy and pursue alternative forms of medicine. “[Sault family spokesperson Nahnda] Garlow said she could not reveal specifics of the treatments Makayla has been undergoing at the reserve, but did say it involved nutritional and spiritual care.”
In a video released by the Saults Makayla was asked about seeing Jesus in her hospital room: “Well, I asked him ‘can you heal me?’ and he said ‘You are already healed.’ And he held out his hands to me and I saw the holes in his hands and I knew that it was Jesus.”
On 5th May Makayla recounted the experience at a religious meeting, “before a crowd of several hundred at a Sarnia, Ont. evangelical gathering hosted by U.S. televangelist Ted Shuttlesworth.”
By 7th May McMaster hospital were trying to get Makayla back on chemotherapy – they had informed the family that they were legally obliged to report the case to the children’s aid authority.
9th May 2014
“Makayla will share her [spiritual encounter with Jesus] at the Bread & Cheese Fest in the Ohsweken Park Sunday May 18 at 6pm. "She wants to thank her Chief (Brian Laforme) & communities, New Credit & Six Nations) & all the communities across Canada & the US, for being there when she needed them the most!"
In a 12th May meeting with New Credit First Nation Band Councillors Makayla’s mother said that an oncologist had told the family that traditional medication was 100% ineffective, expensive, and that anyone claiming it cured cancer should be jailed. The councillors came out in public support of the Saults.
The next day the family released the video of Makayla:
I am writing this letter to tell you that this chemo that I am on is killing my body and I cannot take it anymore. It has brought me to the point where I had to get carried everywhere and had to get everything done for me because I felt so sick. I have asked my mom and dad to take me off the treatment because I don’t want to go this way anymore. I was sick to my stomach all the time and I lost about ten pounds because I couldn’t keep nothing down.
I know that what I have can kill me, but I don’t want to die in a hospital on chemo weak and sick. But when Jesus came into my room and he told me not to be afraid, so if I live or if I die I am not afraid. Oh, the biggest part is that Jesus told me that I am healed. So it doesn’t matter what anybody says, God the creator has the final say over my life.
On 15th May Makayla’s parents highlighted a free lecture to Facebook followers: Brian Clement, co-director of the Hippocrates Health Institute in Florida, was going to be on a neighbouring reservation, speaking about cancer and conquering disease with organic vegan living food.
McMaster hospital made their report and Brant Family and Children's Services looked into the case. By 20th May they had closed the file, commenting: "This is a loving family, we felt their choice to use traditional medicines was within their right. We also felt that if Makayla was apprehended, the stress and other effects on that child would be terrible."
This was also the day of Brian Clement’s lecture, “ALL ABOUT CANCER AND CONQUERING DISEASE WITH LIVING FOODS.”
The Hippocrates Health Institute. A holistic centre in Florida. Palm Beach. It’s the sort of place that has to say things like:
“While we cannot assert that the tools and training guests receive here at HHI directly “causes” healing, we continually witness example after example of tremendous recovery that has been realized by thousands of guests who have elected to maximize their potential through our program.”
Makayla went there in July. In September so did “J.J.” – another First Nation child with Acute Lymphoblastic Leukaemia. Both children’s families opted for $18,000 programmes.
J.J. is an 11-year-old Mohawk girl from the Six Nations of Grand River reserve, which neighbours New Credit. She was having chemotherapy at McMaster Children’s Hospital. She had a 90-95% chance of survival if she continued with the treatment, but quit after ten days.
Her mother switched her to traditional healing before heading for the Hippocrates institute. She told one interviewer that the media were too preoccupied with the indigenous medicine, ignoring the Florida treatments:
“It was a deliberate choice. Her mother told me that as soon as her daughter was diagnosed, she knew she wanted to send her to Hippocrates, which she had first heard about it through a family friend.”
“By [Brian Clement] saying, ‘Oh yes no problem we can help her,’ that’s the day I stopped the chemo.”
A saddened and angry medical blogger discussing the two girls was skeptical towards Brian Clement’s focus on wheatgrass enemas, suggesting that the Hippocrates institute’s treatments spout from the same anatomical region: “Brian Clement’s clinic has nothing to do with Ongwehowe Onongwatri:yo (indigenous medicines) and everything to do with good, old-fashioned European-American quackery focused mainly on wheatgrass, raw vegan diet, and “detoxification.””
In October McMaster hospital took Brant Family and Children's Services to court over J.J. (like with Makayla’s case, they had not intervened). Pushing for chemotherapy, it was noted that Makayla had relapsed.
Makayla’s family responded with a video: “I just want everybody to know that I am alive and well and that I am healed.”
A ruling over came on 14th November: “Aboriginal children now have the right to refuse life-saving medical treatment in favour of traditional healing.”
“The Friday ruling has nothing to do with whether aboriginal medicine works. Family court heard unequivocally in the case of a First Nations girl refusing chemotherapy that no child has survived acute lymphoblastic leukemia without treatment.
Instead, it’s about Canada’s Constitution protecting aboriginal rights.”
The Six Nations Elected Council:
“We sincerely hope that this decision is part of an emerging era of healing and reconciliation between Canada and our nations. We hope that our children and generations to come will no longer experience the mistrust, misunderstanding, and mistreatment by the Canadian government that have been our daily reality for over 200 years.”
It all overlaps. The hospital is trying to force her [Makayla, J.J.] to have chemotherapy. The not quite logical consequence drawn was that the hospital were denying them the right to pursue alternative medicine.
News reportage off of the main road – limited interest, resources and knowledge. News sites take each other’s word for it (with some articles written by a journalist who was also the Sault family spokesperson). Articles are structured around the opinions of the most uncompromising and hyperbolic people involved: the people talking about children being forcibly removed, native rights denied, doctors belittling indigenous culture and inciting the ‘wrath’ of the community – obviously these are the things that got picked for click bait headlines.
The day Makayla died, the Canadian Medical Association Journal: “Had the court forced J.J. to undergo such treatment, the mistrust, anger and resistance that might have ensued within her community could have greatly compromised any future ability to provide optimal care not only to her, but to all Aboriginal people.”
They’re tying themselves up in academic knots. The decision was sound because it was right for the child, the family’s wishes, and for relations with First Nations people. But what if, in another case, those three parties aren’t in accord? Which wins out then? It can’t equally be about the child/family/cultural relations – what if another child’s best interest and/or the family’s wishes are converse to cultural relations, or any combination where one party doesn’t agree?
In accord… I guess it’s getting behind a cause – you find a bigger, umbrella issue at stake, one that will speak to more people. It’s how they fought their issue – how they presented themselves in statements and argued it in court. You pick a news-friendly angle to fight the issue on, even if it’s disingenuous or not quite a fit, and run with it. The parents needed support, so they made the issue about indigenous rights, about western culture bullying Native Canadians.
“We’re never going to allow another agency to ever do that to us again, where they remove our children from their community, from their culture, from their traditions,” said Chief [of the Mississaugas of the New Credit First Nation] Bryan LaForme. “We are not going to let foreign governments come in and apprehend children.”
It makes the case relevant to a whole bunch of organizations who help or comment on the affair publically. Groups take up the angle on the story sight unseen because it fits – it’s their area of expertise.
“Myself, I doubt Makayla Sault intended to be a martyr for native rights, or be part of the price paid for cultural sensitivity. I doubt that she and her parents had anystrong interest in trailblazing or advancing First Nations independence or being pieces in the ongoing game of sovereignty chess. I think they just wanted her to get better.”
And the more one-track reactions build up hugely like that, the more smart people will know how to ‘pitch’ their grievances in public to make sure it’s their version that’s defining the coverage and getting shared amongst the scrolling masses. If you can say it memorably or outrageously enough in one line or one photo, the pay-per-click media would be fools not to show that one snapshot and nothing else, ad nauseam – Nigel Farage’s ‘success.’ Right there.
Makayla died. It’s still a case of ‘it was the chemotherapy that killed her’ vs ‘it was the cancer that killed her.’ She was laid to rest on 24th January.
J.J.’s family expressed their sympathies.
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