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Lyla Carreyn may be the only member of her family who has undergone kidney transplant surgery.
But as far as her parents and brother are concerned, transplant and kidney issues have been life-changing for them, too. Lyla’s mom has adopted a new career because of her experiences with transplant, and her dad and brother have made friends they never would have met and undergone experiences they never would have had without transplant.
“Lyla’s transplant has affected everything our family does,” said Dena, her mother.
Now 11, Lyla was just 3 when she was diagnosed with microscopic polyangiitis (MPA), a rare autoimmune disorder that affected her kidneys and meant she had to undergo dialysis 12 hours a day. Ironically, Lyla’s family had recently moved to the Madison, Wisconsin, area because Dena has lupus and needed world-class care for her autoimmune disorder at UW Health. So, Lyla was exactly where she needed to be to receive care for her rare condition—American Family Children’s Hospital.
Doctors told the Carreyn family that a kidney transplant would be the best treatment for Lyla, and ideally she would find a living kidney donor so she didn’t have to be on the wait list for a deceased donor. Both Lyla and her brother, Clay, were adopted, but neither Lyla’s adoptive parents—Dena and her husband Rodger—nor her birth parents were able to donate kidneys to her.
Beth Battista, a preschool teacher at Lyla’s school, heard that the little girl needed a kidney donor and secretly underwent testing to find out if she was a match. She was, and in spring 2017, Beth gave one of her kidneys to Lyla.
Beth’s selfless gift of life set off a flurry of media attention shortly after the surgeries, including an appearance on “The Ellen DeGeneres Show.” Their two families became good friends, and over the past six years, they have gone on vacations together and keep in regular contact. They even traveled together to southwest Missouri to visit Lyla’s birth mom. “She is part of our family,” Dena said.
Lyla is now a sixth grader who loves swimming, dogs, cooking and working on arts and crafts—a hobby that started when she was on dialysis and had to remain in bed for half of every day. “Lyla is super spunky and quirky, and her own unique person,” Dena said. “When we were in the hospital, we would watch the movie ‘Brave,’ and Merida was her favorite Disney princess.”
She definitely isn’t like other middle-schoolers. “People think you have a transplant and that’s your happy ending,” Dena said. “It’s a huge gift, and it changes your life in amazing ways. But there are restrictions— for example, Lyla can’t play contact sports because a blow to her abdomen is a risk to her new kidney. But this had made her such a strong kid. It’s shaped her personality in a special way.”
Lyla also attends the National Kidney Foundation’s Kidney Camp with her brother, where she’s able to enjoy all the joys of summer camp without having to worry about her medical needs.
Dena, in the meantime, has become incredibly active in the transplant advocacy world. She has been involved with Make-a-Wish and Friends of UW Health, and she is now working as a motivational speaker and writing a book. “It kind of turned into a career for me,” she said. “It keeps me really busy.”
More than anything else, the Carreyns are grateful for Beth’s gift of life, which allowed Lyla to pursue her dreams.