Greyson Parisien’s time on Earth was short — 21 months. But the boy with dark-rimmed eyeglasses who was enchanted by the music in Frozen is having an outsized impact on his tribal community in the far reaches of North Dakota.
His journey to correct a heart defect led the Turtle Mountain Band of the Chippewa First Nation to add an organ donation box to tribal IDs, which it unveiled during a November ceremony.
The rate of organ donations among Indigenous Americans is much lower than other ethnic groups. For some tribes, cultural beliefs are a factor. In rural communities, time, distance and spotty internet access can hinder the process.
“You don’t think about donation and how many people are not donors,” said Greyson’s grandmother, Joan Azure.
“I was thinking, there have to be more donors. When you’re going through this personally, you don’t want someone to die, but you also want your child to live.”
Less than one per cent of the 100,000 people nationwide waiting for organ transplants are Indigenous Americans, who make up nearly three per cent of the U.S. population.
Organ donation rate does not match need
The figures are higher in some states, including New Mexico, where one in five people on the waiting list is Indigenous.
In South Dakota, North Dakota and Minnesota, nearly five per cent of patients awaiting an organ donation are Indigenous American.
Greyson had surgery at five months to correct a heart defect. Then he needed an external device to pump blood through his small body. A heart transplant allowed him to leave the hospital after a year and return to the Turtle Mountain reservation, headquartered in Belcourt, N.D.
Pneumonia ended his life in September 2019. He was 21 months old.
Greyson’s story and spirit live on in parades, powwows and conversations in the community. Azure promotes organ donation during congenital heart week and with trivia games.
Tribal members knew Greyson through updates posted on social media.
In one, Greyson’s mother, Reeanne Parisien, asked the community to choose Greyson’s eyeglasses. The overwhelming vote was the dark-rimmed, boxy ones that he wore with bow ties and khakis, his hair combed in a mohawk.
When he died, the community sought understanding and assurance that it wasn’t because of his new heart.
One of first to add organ donation to tribal ID
His tribe passed a resolution earlier this year in honor of Greyson. During a November event at the tribal college, it encouraged people to check the new organ donor box on tribal IDs and waived the $10 US fee.
“Today is a monumental day that people will remember, especially Indigenous nations, for decades to come,” tribal chairman Jamie Azure said, standing next to Grayson’s photo that was taken after he got a new heart — smiling with arms stretched to the sky.
The tribe believes it could be the first of the 574 federally recognized Indigenous American nations to designate a spot on tribal IDs for organ donors.
Susan Mau Larson, the chief strategy officer for LifeSource, part of a network of nearly 60 organ procurement organizations, said she hopes other tribes follow suit.
Conversations about becoming organ donors or receiving organs from another person can be tough, especially when personal or traditional beliefs don’t align with Western medicine, she explained.
Those conversations sometimes happen 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 discuss. Be comfortable with silence. And comfort families, regardless of the decision.
About 40 per cent of people in Rollette County, where Greyson’s tribal community on the Turtle Mountain reservation is based, have now signed up to become organ donors, compared to 65 per cent overall in North Dakota.
Education, means or opportunity are big factors, said Mau Larson. Simply getting a driver’s licence means traveling 130 kilometres to the Turtle Mountain reservation. But tribal IDs are renewed every two years, giving tribal members a more frequent opportunity to choose organ donation.
Studies show that organ recipients are best matched with donors of similar genetic makeup, Mau Larson said. Kidneys are especially needed in Indigenous American communities, where one-quarter of the population is diabetic, she said.
Greyson and his family spent much of his life in Rochester, Minn., for his medical care. His heart came from a girl named Coralynn.
“Even in his worst moments, his smile shined brightly, his presence brought happiness and light to everyone he came into contact with,” said his grandmother Joan Azure. “And he provided guidance to many with that bright shining light through his bravery and strength.”