Changing Lives: Indigenous organ recipients and donor families reflect on decisions that often break cultural traditions

The only thing Cheryl “Renee” Roybal knows about the heart that now thumps in her chest is that it belonged to an 11-year-old girl from Los Angeles. Despite not knowing the girl’s name, Roybal has felt a connection with her since she emerged from her successful heart transplant surgery in 2002.

“After the transplant I was craving chocolate. I had my husband go get chocolate ice cream and I never ate chocolate. I love dark chocolate now,” she said from her home at Pueblo de San Ildefonso in northern New Mexico.

Roybal also began having dreams of being in junior high: struggling to remember her locker combination, roller skating and enjoying bike rides.

“Every night it was an adventure,” Roybal recalled. “I laughed because I was ‘younger’ than my youngest daughter.”

In 1999, at the age of 40, Roybal began experiencing heart problems. She was the perfect picture of health, without any prior issues, jogging to stay fit when she wasn’t working or with her family.

“It happened out of the blue.” Roybal said. “It was unbeknown to me or the doctors what happened. But basically my heart was beating three times the normal rate and it was just shut off. Sometimes people are really physically fit but then all the sudden they just collapse.”

Doctors diagnosed Roybal with an enlarged heart. She received an implanted defibrillator, a device designed to deliver electric charges to restore a regular heartbeat, however, Roybal experienced severe side effects which led to frequent hospitalizations.

“One time I went in (to the emergency room) for an electrical storm. It would not stop, it kept shocking me,” Roybal said. “Some people say it’s like being kicked by a horse. To me it was just something that blasted inside me, teeth were chattering, it was just awful.”

After three years with the defibrillator, Roybal’s heart was still enlarged and showed no signs of improvement. She relocated to California, where she was told she would have better luck getting on a transplant waiting list. After seven months of waiting, she received the news that a heart had become available, leaving her in disbelief.

Heart donors are matched to recipients based on body size rather than age. Despite the donor being only 11 years old, the two were a match, as Roybal’s illness left her weighing only 100 pounds and dependent on a wheelchair.

Since the transplant, Roybal has seen her own daughters grow, marry and have children of their own.

After Roybal’s donor died at 11, her parents decided to donate her body. That gift has profoundly changed Roybal’s life.

Now, Roybal shares her experience in the hope of inspiring others to consider donation or transplantation, especially within Native populations. Many Native cultures hold taboos regarding posthumous body modification, yet these communities also have some of the highest needs for transplants.

In New Mexico, one out of every five people on the current transplant waiting list is Native American, according to Celina Espinoza of New Mexico Donor Services.

“That’s a huge percent of our current population that’s in need and transplants are usually more successful if they come from the same ethnic background,” Espinoza said.

“I’m not telling (anyone to get a transplant), but at least think about it, because you never know. I never thought it would happen to me,” Roybal said.

Rose Bowl Parade

Roybal was the distinguished Rider Honoree for the 2024 OneLegacy Donate Life float at the Rose Bowl Parade on New Year’s Day, which showcased Hopi culture with the theme of “Woven Together: The Dance of Life.”

Roybal was selected for the honor after Donate Life California heard her story when she expressed her excitement for the float on Facebook. The organization sponsored her and paid for her New Mexico and Florida family members to join the festivities.

“I wanted to cry and shout,” Roybal said. “I had always loved the Rose Bowl parade.”

Roybal volunteered with other riders and their families to add the final details to the float. Roybal and her daughter worked on the feathers of the corn maiden’s headdress, adding marigolds and crushed coconut flakes. She said it was tedious work, but they loved every second.

The night before the parade, One Legacy held a dinner where the Hopi dancers performed and Roybal spoke.

It was there she met other Native transplant recipients and living donors that would be riding the float.

Float riders were called to the stage and introduced. They all had a bottle of different colored sand that they added to a large glass jar on stage.

“The sand represented all of us – that we fought together,” Roybal said.


A sister’s gift

One of the float riders was Orlan Honyumptewa, a traditional Hopi kachina carver from the Village of Upper Moenkopi. Honyumptewa received his sister’s kidney after his own failed.

Diagnosed with diabetes at the age of 13, Honyumptewa faced the challenge of managing his condition. By the time he was 32, his health took a significant downturn. During a routine checkup, medical professionals informed him that his kidneys were failing.

Honyumptewa started undergoing dialysis, a treatment where individuals are connected to a machine multiple times a week to filter toxins and excess water from the blood, since the kidneys are unable to perform this function anymore. Typically, those on dialysis have a life expectancy of 5 to 10 years, unless they receive a kidney donation. With kidneys, the donor can be living since everyone has two kidneys and only one is necessary for normal function.

Without his knowledge, Honyumptewa’s bloodline sister came forward and was found to be a match. A year later, he received one of his sister’s kidneys.

Now 48 years old, Honyumptewa has enjoyed 15 years of good health. He continues to pursue his passion for art, witnessing the growth of his children and proudly embracing his role as a grandfather.


An Eagle Scout serves

Frederick Jones, of Navajo and Puerto Rican descent, was also honored on the “Woven Together: The Dance of Life” float this year. Jones died in 2017 at the age of 27, and his liver, heart, pancreas and corneas were donated to those in need.

A floragraph featuring Jones’ portrait was among 40 other donors depicted on the float, all crafted using natural materials such as crushed flowers, seeds, and beans, in accordance with Rose Bowl tradition.

Jones’ mother, Alberta, and sister, Miceale, had the opportunity to meet some of the recipients of Jones’ organs while assisting with the final touches on his floragraph before the parade. This special moment took place during a ceremony organized by New Mexico Donor Services in their hometown of Albuquerque, New Mexico.

“All of the floragraph was filled except for his eyebrows,” Alberta said, explaining that they used ground coffee to fill them in. “Coffee was one of Fred’s favorite things – he was a coffee connoisseur and he got us into fresh ground coffee, he was really health conscious.”

Alberta and Miceale said it was a magical experience meeting Jones’ kidney recipients and hearing how their lives had improved since receiving his kidneys.

“In the Navajo tradition, you walk the invisible way and you’re to keep balance with nature,” Miceale said. “And right away when meeting the two of them, I could see the balance already…The organ that comes in a pair in the body went to a male and a female, and to me that right there is a universal reverse of balance… That was really beautiful to see, the yin and the yang, the male and the female, the balance of the universe.”

Miceale said the male recipient was boisterous and artistic, while the female was educated and soft spoken, all qualities her younger brother had embodied.

“He was very reserved when it called for it and he knew how to really just listen,” Miceale said.

Jones was among the first graduating class of Bataan Military Academy and his family believes he was the first Diné Eagle Scout. His 2009 Eagle Scout Project honored veterans by refurbishing the Flag Avenue at the veterans hospital in Albuquerque with all donated materials.

“Frederick had always been a kind-hearted person, and he was always willing to help anybody and everybody – even a total stranger – and he never expected anything in return ever since he was little,” Alberta said.

After Jones’ family and the donor recipients completed his floraraph, it was sent back to Pasadena for the Rose Bowl parade. Miceale and Alberta had the opportunity to watch the parade in person, which they described as a full-circle moment: when Jones was alive, they had made a promise to attend the parade together one day.

“Our favorite thing was to get up on Jan. 1 to watch the entire Rose Bowl Parade and make a beautiful brunch,” Miceale said.

It was after watching the 2004 Rose Bowl Parade and learning about what OneLegacy was about that the Jones family began a conversation about cremation and organ donation. Frederick and Miceale said they wanted to be donors, but Alberta said that was breaking Navajo tradition.

“But in our hearts, my mom has always raised us to think of others and to think of the community, and we kept asking, ‘Why can’t we do this?” Miceale said. “If somebody needs something and we’re not using it any longer, why can’t we bless them with that?

Jumping ahead to 2006, Miceale fell ill with kidney failure at the age of 21. Enduring four years of dialysis, her only hope for a normal life rested on receiving a transplant. At the time, Frederick, then 16, immediately wanted to donate one of his kidneys. However, given his aspirations to join the armed services, he was advised against it.

“It was a hard four years that she was on dialysis,” Alberta said, adding that her traditional Navajo family looked down on the fact that Miceale chose to receive an organ.

“During those years, no Native American family members came to our side to help support, to offer any kind of help. None whatsoever,” Alberta said.

A donor eventually came through for Miceale, and she has been healthy ever since her transplant.

Witnessing the profound impact of organ donation on his sister, Frederick made the choice to become an organ donor himself. Little did anyone know, at the age of 27, Frederick would be involved in a car accident that would leave him with severe head trauma.

“Frederick’s accident happened and the Native family only came out one time, which was when he was on life support at the hospital,” Alberta said. “And all they expressed was that he not be cremated because God will not accept him to Heaven, and that donation is out of the question. This is how much Native American people don’t believe in donation: my own half-sister had kidney failure at the time, and refused her nephew’s kidney. A couple months later, she died.”

Although now distant from their Navajo family members, Alberta said they don’t regret honoring Frederick’s wishes.

“Even though we had the experience that we have gone through, we’ll continue to advocate for donation … because we know what that pain is to have somebody so sick that we love them and we want one more day with them,” Miceale said. “To know that somebody else is truly selfless and would be able to give that gift upon them departing from this material world is just the most magnificent gift you could possibly give to somebody.”

Miceale and Alberta credit Transplant Games of America for being able to bond with other donor families at events around the country.

Honoring life

Espinoza said she knows organ donation isn’t necessarily the first consideration for many Indigenous people, but she hopes they will at least consider being recipients. “Dialysis is no way to live, it’s very hard on the body, it’s very hard on financial resources,” Espinoza said. “You have to go into the clinic usually two to three times a week and it can be very, very draining over all. So if we can help get the message out and get you transplanted, we’re improving a quality of life.”

New Mexico Donor Services honors Native traditions as much as possible with those that do choose donation before they die.

“We still honor cultural burial traditions, so we try to make donation happen within the windows of whatever is important to the family, whether there’s certain time restrictions around it or certain times of day of the passing of that person,” Espinoza said.

And with all donors, Espinoza said details like the donors’ favorite foods and hobbies are read out before the transplant surgery, ensuring that the people behind the life-saving organs are recognized as their whole human entity, not just the organ they are gifting.

Roybal has had moments of theological reflection about her transplant, but in the end, she is glad she chose life, and hopes others will too.

“For some time I did struggle with, did I defy my death? No, it was meant to be and you know, I didn’t go, I had a purpose,” Roybal said. “The one thing I do try to tell everybody is that Native people are giving people. We’re always giving. Pueblo people — we have feast days — so we invite people into our homes, we feed them, we tell them to come dance, we open our homes and our hearts for them. When we dance there’s prayer and everything for everybody – for all mankind. We give to each other and that’s what we are. And so I think they should also remember that when it comes to donations. Give. Give part of yourself. Give someone else that chance.”

Find more information on donation, visit donatelifenm.org or donatelife.net.

The only thing Cheryl “Renee” Roybal knows about the heart that now thumps in her chest is that it belonged to an 11-year-old girl from Los Angeles. Despite not knowing the girl’s name, Roybal has felt a connection with her since she emerged from her successful heart transplant surgery in 2002.

“After the transplant I was craving chocolate. I had my husband go get chocolate ice cream and I never ate chocolate. I love dark chocolate now,” she said from her home at Pueblo de San Ildefonso in northern New Mexico.

Roybal also began having dreams of being in junior high: struggling to remember her locker combination, roller skating and enjoying bike rides.

“Every night it was an adventure,” Roybal recalled. “I laughed because I was ‘younger’ than my youngest daughter.”

In 1999, at the age of 40, Roybal began experiencing heart problems. She was the perfect picture of health, without any prior issues, jogging to stay fit when she wasn’t working or with her family.

“It happened out of the blue.” Roybal said. “It was unbeknown to me or the doctors what happened. But basically my heart was beating three times the normal rate and it was just shut off. Sometimes people are really physically fit but then all the sudden they just collapse.”

Doctors diagnosed Roybal with an enlarged heart. She received an implanted defibrillator, a device designed to deliver electric charges to restore a regular heartbeat, however, Roybal experienced severe side effects which led to frequent hospitalizations.

“One time I went in (to the emergency room) for an electrical storm. It would not stop, it kept shocking me,” Roybal said. “Some people say it’s like being kicked by a horse. To me it was just something that blasted inside me, teeth were chattering, it was just awful.”

After three years with the defibrillator, Roybal’s heart was still enlarged and showed no signs of improvement. She relocated to California, where she was told she would have better luck getting on a transplant waiting list. After seven months of waiting, she received the news that a heart had become available, leaving her in disbelief.

Heart donors are matched to recipients based on body size rather than age. Despite the donor being only 11 years old, the two were a match, as Roybal’s illness left her weighing only 100 pounds and dependent on a wheelchair.

Since the transplant, Roybal has seen her own daughters grow, marry and have children of their own.

After Roybal’s donor died at 11, her parents decided to donate her body. That gift has profoundly changed Roybal’s life.

Now, Roybal shares her experience in the hope of inspiring others to consider donation or transplantation, especially within Native populations. Many Native cultures hold taboos regarding posthumous body modification, yet these communities also have some of the highest needs for transplants.

In New Mexico, one out of every five people on the current transplant waiting list is Native American, according to Celina Espinoza of New Mexico Donor Services.

“That’s a huge percent of our current population that’s in need and transplants are usually more successful if they come from the same ethnic background,” Espinoza said.

“I’m not telling (anyone to get a transplant), but at least think about it, because you never know. I never thought it would happen to me,” Roybal said.

Rose Bowl Parade

Roybal was the distinguished Rider Honoree for the 2024 OneLegacy Donate Life float at the Rose Bowl Parade on New Year’s Day, which showcased Hopi culture with the theme of “Woven Together: The Dance of Life.”

Roybal was selected for the honor after Donate Life California heard her story when she expressed her excitement for the float on Facebook. The organization sponsored her and paid for her New Mexico and Florida family members to join the festivities.

“I wanted to cry and shout,” Roybal said. “I had always loved the Rose Bowl parade.”

Roybal volunteered with other riders and their families to add the final details to the float. Roybal and her daughter worked on the feathers of the corn maiden’s headdress, adding marigolds and crushed coconut flakes. She said it was tedious work, but they loved every second.

The night before the parade, One Legacy held a dinner where the Hopi dancers performed and Roybal spoke.

It was there she met other Native transplant recipients and living donors that would be riding the float.

Float riders were called to the stage and introduced. They all had a bottle of different colored sand that they added to a large glass jar on stage.

“The sand represented all of us – that we fought together,” Roybal said.


A sister’s gift

One of the float riders was Orlan Honyumptewa, a traditional Hopi kachina carver from the Village of Upper Moenkopi. Honyumptewa received his sister’s kidney after his own failed.

Diagnosed with diabetes at the age of 13, Honyumptewa faced the challenge of managing his condition. By the time he was 32, his health took a significant downturn. During a routine checkup, medical professionals informed him that his kidneys were failing.

Honyumptewa started undergoing dialysis, a treatment where individuals are connected to a machine multiple times a week to filter toxins and excess water from the blood, since the kidneys are unable to perform this function anymore. Typically, those on dialysis have a life expectancy of 5 to 10 years, unless they receive a kidney donation. With kidneys, the donor can be living since everyone has two kidneys and only one is necessary for normal function.

Without his knowledge, Honyumptewa’s bloodline sister came forward and was found to be a match. A year later, he received one of his sister’s kidneys.

Now 48 years old, Honyumptewa has enjoyed 15 years of good health. He continues to pursue his passion for art, witnessing the growth of his children and proudly embracing his role as a grandfather.


An Eagle Scout serves

Frederick Jones, of Navajo and Puerto Rican descent, was also honored on the “Woven Together: The Dance of Life” float this year. Jones died in 2017 at the age of 27, and his liver, heart, pancreas and corneas were donated to those in need.

A floragraph featuring Jones’ portrait was among 40 other donors depicted on the float, all crafted using natural materials such as crushed flowers, seeds, and beans, in accordance with Rose Bowl tradition.

Jones’ mother, Alberta, and sister, Miceale, had the opportunity to meet some of the recipients of Jones’ organs while assisting with the final touches on his floragraph before the parade. This special moment took place during a ceremony organized by New Mexico Donor Services in their hometown of Albuquerque, New Mexico.

“All of the floragraph was filled except for his eyebrows,” Alberta said, explaining that they used ground coffee to fill them in. “Coffee was one of Fred’s favorite things – he was a coffee connoisseur and he got us into fresh ground coffee, he was really health conscious.”

Alberta and Miceale said it was a magical experience meeting Jones’ kidney recipients and hearing how their lives had improved since receiving his kidneys.

“In the Navajo tradition, you walk the invisible way and you’re to keep balance with nature,” Miceale said. “And right away when meeting the two of them, I could see the balance already…The organ that comes in a pair in the body went to a male and a female, and to me that right there is a universal reverse of balance… That was really beautiful to see, the yin and the yang, the male and the female, the balance of the universe.”

Miceale said the male recipient was boisterous and artistic, while the female was educated and soft spoken, all qualities her younger brother had embodied.

“He was very reserved when it called for it and he knew how to really just listen,” Miceale said.

Jones was among the first graduating class of Bataan Military Academy and his family believes he was the first Diné Eagle Scout. His 2009 Eagle Scout Project honored veterans by refurbishing the Flag Avenue at the veterans hospital in Albuquerque with all donated materials.

“Frederick had always been a kind-hearted person, and he was always willing to help anybody and everybody – even a total stranger – and he never expected anything in return ever since he was little,” Alberta said.

After Jones’ family and the donor recipients completed his floraraph, it was sent back to Pasadena for the Rose Bowl parade. Miceale and Alberta had the opportunity to watch the parade in person, which they described as a full-circle moment: when Jones was alive, they had made a promise to attend the parade together one day.

“Our favorite thing was to get up on Jan. 1 to watch the entire Rose Bowl Parade and make a beautiful brunch,” Miceale said.

It was after watching the 2004 Rose Bowl Parade and learning about what OneLegacy was about that the Jones family began a conversation about cremation and organ donation. Frederick and Miceale said they wanted to be donors, but Alberta said that was breaking Navajo tradition.

“But in our hearts, my mom has always raised us to think of others and to think of the community, and we kept asking, ‘Why can’t we do this?” Miceale said. “If somebody needs something and we’re not using it any longer, why can’t we bless them with that?

Jumping ahead to 2006, Miceale fell ill with kidney failure at the age of 21. Enduring four years of dialysis, her only hope for a normal life rested on receiving a transplant. At the time, Frederick, then 16, immediately wanted to donate one of his kidneys. However, given his aspirations to join the armed services, he was advised against it.

“It was a hard four years that she was on dialysis,” Alberta said, adding that her traditional Navajo family looked down on the fact that Miceale chose to receive an organ.

“During those years, no Native American family members came to our side to help support, to offer any kind of help. None whatsoever,” Alberta said.

A donor eventually came through for Miceale, and she has been healthy ever since her transplant.

Witnessing the profound impact of organ donation on his sister, Frederick made the choice to become an organ donor himself. Little did anyone know, at the age of 27, Frederick would be involved in a car accident that would leave him with severe head trauma.

“Frederick’s accident happened and the Native family only came out one time, which was when he was on life support at the hospital,” Alberta said. “And all they expressed was that he not be cremated because God will not accept him to Heaven, and that donation is out of the question. This is how much Native American people don’t believe in donation: my own half-sister had kidney failure at the time, and refused her nephew’s kidney. A couple months later, she died.”

Although now distant from their Navajo family members, Alberta said they don’t regret honoring Frederick’s wishes.

“Even though we had the experience that we have gone through, we’ll continue to advocate for donation … because we know what that pain is to have somebody so sick that we love them and we want one more day with them,” Miceale said. “To know that somebody else is truly selfless and would be able to give that gift upon them departing from this material world is just the most magnificent gift you could possibly give to somebody.”

Miceale and Alberta credit Transplant Games of America for being able to bond with other donor families at events around the country.

Honoring life

Espinoza said she knows organ donation isn’t necessarily the first consideration for many Indigenous people, but she hopes they will at least consider being recipients. “Dialysis is no way to live, it’s very hard on the body, it’s very hard on financial resources,” Espinoza said. “You have to go into the clinic usually two to three times a week and it can be very, very draining over all. So if we can help get the message out and get you transplanted, we’re improving a quality of life.”

New Mexico Donor Services honors Native traditions as much as possible with those that do choose donation before they die.

“We still honor cultural burial traditions, so we try to make donation happen within the windows of whatever is important to the family, whether there’s certain time restrictions around it or certain times of day of the passing of that person,” Espinoza said.

And with all donors, Espinoza said details like the donors’ favorite foods and hobbies are read out before the transplant surgery, ensuring that the people behind the life-saving organs are recognized as their whole human entity, not just the organ they are gifting.

Roybal has had moments of theological reflection about her transplant, but in the end, she is glad she chose life, and hopes others will too.

“For some time I did struggle with, did I defy my death? No, it was meant to be and you know, I didn’t go, I had a purpose,” Roybal said. “The one thing I do try to tell everybody is that Native people are giving people. We’re always giving. Pueblo people — we have feast days — so we invite people into our homes, we feed them, we tell them to come dance, we open our homes and our hearts for them. When we dance there’s prayer and everything for everybody – for all mankind. We give to each other and that’s what we are. And so I think they should also remember that when it comes to donations. Give. Give part of yourself. Give someone else that chance.”

Find more information on donation, visit donatelifenm.org or donatelife.net.