16-year-old is a ‘Ray of sunshine’ throughout pediatric pancreas-kidney transplant

Regan (affectionally called Ray or Ray Ray) Myers of Phoenix, Arizona has had a long health journey, despite only being 16. Born with Down syndrome, Regan was a healthy, happy baby until he was five months old.

That’s when Regan began having infantile spasms, a rare form of epilepsy. Treated with steroids, the seizures stopped around 9 months, only to be replaced by the next life-threatening health condition: diabetic ketoacidosis. Regan’s family didn’t even know he was diabetic until he was being airlifted from one hospital to another for specialized care. The doctors told Regan’s parents to prepare for the worst. In the pediatric intensive care unit at a Phoenix hospital, Regan’s sugar levels were erratic and hard to control but eventually doctors were able to stabilize his type 1 diabetes.

Living in and out of the hospital became the new normal for Regan, who was also diagnosed with Hashimoto’s, an autoimmune disorder that affects the thyroid. He also has nerve damage and speech apraxia, a disorder that makes it difficult to coordinate movements needed to speak. Hashimoto’s and speech apraxia are both common in people with Down syndrome. Neuropathy is a common complication from diabetes.

When Regan was 13, he was given medication for mild kidney damage. At 14, his kidney function had dropped from 60 to 70% to 17% in just three months. He went through several treatments, including dialysis. The steroids that treated Regan’s infantile spasms when he was a baby had damaged his pancreas. The diabetes damaged his kidneys. He was now in need of a transplant for both and was put on the waiting list.

M Health Fairview Masonic Children’s Hospital is one of the only hospitals in the nation that offers combined pediatric pancreas-kidney transplants. Pediatric pancreatic transplants are much rarer than those of adults. It is uncommon for a child to experience severe enough complications from type 1 diabetes.

Regan’s family travelled to Minnesota to meet with Dr. Raja Kandaswamy, a solid organ transplant surgeon with M Health Fairview and the University of Minnesota Medical School, and a team of nephrologists and other specialists.

“Meeting Dr. Kandaswamy was a very surreal experience,” said Candace Myers, Regan’s mom. “I was both thrilled and terrified at the same time by the prospect of my little guy going through such a major surgery. Dr. K put us at ease and helped us to feel confident that everything would be alright.”

Regan’s family got the call to head back to Minnesota for his transplant in December 2024. They went straight to the hospital and Regan was prepped for surgery. After a successful transplant, Regan was in the hospital for over a month and was discharged at the end of January. 

“Regan is an amazingly resilient young man with complex medical issues,” Kandaswamy said. “His combined pancreas-kidney transplant was successful. He’s done well and thanks to both his strength, and the support of his family, we expect he’ll do well from a transplant standpoint.”

Regan and his family remained close to his medical team, but now Regan has reached the recovery finish line and is heading home to Arizona. His mom says getting back home to Phoenix will be a happy adjustment for Regan. He’ll get to be back with both his parents, and his older brother and sister. Perhaps the most exciting part of heading home is getting to reunite with the family dog, Brie.