The love and support of family help Greyson through his health journey.
Greyson was born with a congenital heart defect (Tetralogy of Fallot), his family learned that he would need surgery before he was six months old to repair his heart. In May 2018, Greyson and his family made the nine-hour trip from the Turtle Mountain Reservation in Belcourt, North Dakota to the Mayo Clinic in Rochester Minnesota.
On May 21st, Greyson had a 13-hour surgery to fix his little heart. A few days later Greyson went into cardiac arrest and while doctors were able to stabilize him with CPR and life supporting measures, his heart could not recover from the event. In July he was put on a Berlin Heart (external heart) that would keep him alive until he could receive a heart transplant.
For 12 months Greyson would be in the hospital awaiting a heart with his parents, Reeanne and Ridge, by his side. Through all of his hardships, Greyson kept his smile. He was a happy little guy who loved music and the sound of ripping paper. His happiness was infectious, and he brought a smile to all of his doctors and nurses.
The Support of Family
During this time, Greyson’s entire family did what they could to support him and each other. Greyson’s sister Parker would visit every other week with Grandma (Joan) and Grandpa (Keith). Parker was only 6 years old, but she seemed to know how sick her brother was and prayed everyday for him to get a new heart.
On thanksgiving Joan broke the wishbone off the turkey and she and Parker made a wish on it. Parker couldn’t keep her wish a secret and told Joan that she wished for a new heart for her brother.
A New Heart for Greyson
In April of 2019, Greyson received the gift he and his family had so patiently waited for – a new heart. The entire family was overjoyed that he would have a chance to live a healthy life. Parker was especially excited because her thanksgiving wish had come true!
The St. Mary’s staff were the caring and loving support the family needed during this time and had become like family. They threw Greyson a huge going away party when he was discharged on May 21st, 2019 – exactly one year after he was admitted. Greyson and his family remained in Rochester for a few months so he could be monitored for complications and rejection.
On July 19th Greyson was officially on his way back home to the Turtle Mountains. A huge homecoming event occurred that included a police escort, numerous speakers (this included a LifeSource member that spoke to the audience about organ donation), a meal, and traditional music to welcome this little hero home. Hundreds of community members were in attendance.
The next few months consisted of family time, doctors’ appointments, and getting reacquainted with the community he had left 14 months earlier.
Greyson Gets His Name
One day in September Greyson didn’t seem to be feeling well. He had molars coming in and Reeanne thought that was probably the reason why. She brought him in to see the pediatric cardiologist for an echocardiogram just to make sure everything was okay. His tests looked fine, and the echo results looked great. A few days later his health deteriorated, and his family learned he had pneumonia. At just 21 months old, Greyson passed away from complications of the illness.
Greyson was given his traditional name shortly after his death, from an elder in the community.
Waasizo Gichi Anong Ningaabii’ Anong
Translated: Shining big star in the west
It was a sad day in the community when little Greyson went to be with the angels. Joan recalls driving through town early in the morning after the day of his passing. It felt like there was a dark cloud over the entire reservation and everyone was crying. Roads that were usually busy with traffic were empty and there was an overwhelming feeling of sadness.
Later that day as the drums played to help Greyson on his journey, the eagles appeared to help family and friends with their sadness and grief. The fire and drums went for 3 days/nights and could be heard from miles away, hundreds maybe even thousands of people payed their respect to this little boy, who brought love, laughter and unity to a community in his short time on earth.
Greyson’s family and community carry on his legacy in different ways. Joan and Reeanne advocate for organ donation and use Greyson’s story to encourage more people to check the box. Greyson’s grandfather Keith visits his grave daily – even when it’s -30 in North Dakota – to pray with him and ask him to watch everyone.
Events are held in Greyson’s honor throughout the year- a special giveaway at the August powwow celebration, annual Turtle Mountain Days parade float, Donate Life Month trivia, as well as organ donation booths at health fairs and other community events. The tribe also passed “The Greyson Resolution” which will make the option to register as an organ, eye and tissue donor available on the tribes ID’s.
Our family is so grateful to the family that chose to “Share Life” through organ donation.
– Joan Azure