Greyson Parisien’s time on earth was short. But the boy in the dark-rimmed glasses, entranced by the music in Frozen, the sound of paper tearing and his father playing the guitar, has an outsized impact on his tribal community in the far reaches of North Dakota.
His journey to correct a heart defect prompted the Turtle Mountain Band of Chippewa Indians to add an organ donation box to tribal ID cards, which they unveiled during a ceremony in November.
The rate of organ donation among Native Americans is much lower than among other ethnic groups. For some tribes, cultural beliefs play a role. In rural communities, time, distance and patchy internet access can hinder the process.
“You don’t think about donations and how many people aren’t donors,” Greyson’s grandmother, Joan Azure, said. “I thought, ‘There must be more donors.’ If you’re going through this personally, you don’t want anyone to die, you want your child to live as well.”
Less than 1% of the 100,000 people nationwide awaiting organ transplants are Native Americans catching up almost 3% the US population.
The numbers are higher in some states, including New Mexico, where 1 in 5 people on the waitlist are Native American. In South Dakota, North Dakota and Minnesota, nearly 5% of patients awaiting organ donation are Native American.
Greyson underwent surgery when he was 5 months old to correct a heart defect, then needed an external device to pump blood through his tiny body. A heart transplant allowed him to leave the hospital after a year and return to the Turtle Mountain Reservation, headquartered in Belcourt, North Dakota.
Suddenly, in September 2019, pneumonia ended his life. He was 21 months old.
Greyson’s story and spirit live on in parades, powwows and community talks. Azure promotes organ donation during Birth Heart Week and with trivia games.
Tribe members knew him well through updates posted on social media.
In one, Greyson’s mother, Reeanne Parisien, asked the community to vote for Greyson’s glasses. The overwhelming voice was the dark-rimmed, boxy ones he wore with bows and khakis, his hair combed in a mohican. When he died, the community sought understanding and reassurance that it wasn’t because of his new heart.
His tribe passed a resolution honoring Greyson earlier this year. During a November event at the Tribal College, it encouraged people to check the new organ donation box for tribal ID and waived the $10 fee.
“Today is a monumental day that people, especially Aboriginal people, will remember for decades to come,” said tribal leader Jamie Azure, standing next to Grayson’s photo, which was taken after he had a heart transplant – smiling along arms stretched to the sky.
The tribe believes it could be the first of 574 federally recognized Native American nations to designate a place on tribal ID cards for organ donors.
Susan Mau Larson, the chief strategy officer of LifeSource, part of a network of nearly 60 organ procurement organizations, said she hopes other tribes will follow suit.
Conversations about becoming an organ donor or receiving organs from someone else can be difficult, especially when personal or traditional beliefs are at odds with Western medicine.
These conversations sometimes take place in hospital rooms as someone nears the end of their life. And there are guidelines: Identify the decision maker in a family. Tell a story, don’t explain the process. Give the family time to talk. Feel good in the silence. And comforting families, regardless of the decision.
In the Southwest, Darryl Madalena is encouraging tribal members to consider becoming organ donors, making a link between kidney disease — which affects Native Americans more often than the US population — and organ donation and reception.
He talks about the tribes’ increasing reliance on Western medicine and hypothetically asks if members with a pacemaker or hip replacement would be prevented from continuing their journey. If no, why not donate or receive an organ?
“So much of Westernized medicine is in the very fabric of our communities, our lives, our culture,” he said. “If you pull a string, it can be very harmful to the health of the indigenous people.”
Madalena’s work with New Mexico Donor Services is fueled in part by the memory of his partner Mylia Phouamkha, a Hopi woman who died within a week of being hospitalized with liver problems in 2019, without enough time to seriously consider a transplant.
She and Madalena had a son together, Micca, who was two years old at the time.
“If your heart is telling you and you have it in you, if you need a transplant, I would say yes, do it,” said her father, Myron Ami, as Micca sat on his lap.
Madalena has been criticized for mentioning death, which can be a taboo subject. His Jemez Pueblo congregation in New Mexico believes that people enter this world unharmed, both physically and spiritually, and that they should leave it the same way.
“That’s what we’re taught, that’s still the belief,” he said.
The Turtle Mountain Band of Chippewa Indians doesn’t hold the same beliefs, Joan Azure said. About 40% of people in Rollette County, where the tribe is based, have signed up to be organ donors, compared to 65% in North Dakota overall.
Education, means or opportunity are big factors, Mau Larson said. Simply getting a driver’s license means being 80 miles (130 kilometers) from the Turtle Mountain Reservation. However, tribal IDs are renewed every two years, giving tribal members a more frequent opportunity to choose to donate organs.
Studies show that organ recipients are best matched with donors who have a similar genetic makeup, Mau Larson said. Kidneys are particularly needed in Native American communities, where a quarter of them the population is diabetic, She said.
Greyson and his family spent much of his life caring for his medical needs in Rochester, Minnesota, hundreds of miles from the rolling hills and lakes of the Turtle Mountain Reservation. His heart came from a girl named Coralynn, whose picture was interlocked on a jigsaw puzzle piece with Greysons on a float banner that read “Not All Heroes Wear Cloaks!”.
After Greyson died, his family asked a Turtle Mountain elder to give him a traditional name through their creator. The elder was in a sweat lodge praying when it came to him: “Waasizo Gichi Anong Ningaabii’ Anong” or “Shining Big Star in the West,” said Joan Azure.
“Even at his worst moments, his smile shone brightly, his presence bringing happiness and light to everyone he came in contact with,” she said.
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Fonseca reported from Flagstaff, Arizona. Fonseca covers Indigenous communities in the AP’s Race and Ethnicity Team. Follow her on Twitter: @FonsecaAP. Associated Press writers Susan Montoya Bryan of Albuquerque, New Mexico and Dave Kolpack of Belcourt, North Dakota contributed to this report.
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