Child with Microscopic Polyangiitis Receives Transplant from Surprise Source

November 9, 2016

A Madison girl is in a desperate fight against the clock.

Lyla Carreyn is a preschooler who just wants to be like the other kids but needs a cure for her rare illness. In a twist of fate, hope proved closer than her family ever imagined.
To see Lyla run around a playground, you’d think she’s a typical 4-year-old. But her mother, Dena Carreyn, will be quick to tell you that Lyla’s not like this most days.

“Ninety-seven percent of the time, she feels pretty awful and doesn’t really have much energy,” Carreyn said. “So we’ve come to appreciate what we call the 3 percent.”

Lyla’s medical challenge began one year ago, when Dena got a call from her preschool, telling her Lyla was running a high fever.

“I went and got her from school and took her to urgent care,” Carreyn said. “Within 15 minutes, we were in an ambulance on our way to Children’s Hospital.”

Lyla’s kidneys suddenly failed, and her lungs filled with blood.

“Doctors told us at that point they didn’t know if she’d make it through the weekend,” Carreyn said.

After a three-week coma, Lyla woke up. She was diagnosed with a rare autoimmune disease known as MPA or microscopic polyangiitis. She was in desperate need of a kidney transplant.

“We had friends and family from all over the country getting tested, and we looked everywhere for a match,” Carreyn said.

Even Lyla’s birth mother was tested; she wasn’t a match either.

Six months passed with no luck, until Beth Battista saw a post on Facebook.

“I just felt like I had to go in and get tested,” Battista said.

She turned out to be a match. She also turned out to be Lyla’s 4K teacher.

“I didn’t know at the time she was going to be in my class this year,” Battista said. “I never really believed in fate, but I’m a believer now.”

Battista told Carreyn she would be Lyla’s donor by giving her a gift at school. Inside the box was a note that read, “I may just be her teacher now but soon a piece of me will be with Lyla forever. I’m her kidney donor.”

“Utter shock and disbelief,” Carreyn said. “It took a minute to sink in and when it did, we were just shaking and crying.”

“Being able to save a little, innocent child’s life and give her a future, it’s just amazing,” Battista said.

The new kidney will spare Lyla from what has become her nightly routine.

“On an average day, she receives 19 different medications, in addition to the 12 hours of dialysis,” Carreyn said.

Overnight, Lyla stays attached to a machine that takes toxins out of her body and puts medicine in.

“Because her kidneys don’t work and she doesn’t produce urine, any fluids she takes in during the day have to be taken off during dialysis,” Carreyn said.

The kidney transplant will spare Lyla from this nightly ordeal. Battista said the surgery will be laparoscopic with three small incisions.

“I will need five-to-six weeks to recover mainly because you’re sore and you’re tired, but otherwise I should be able to live a totally normal life,” Battista said.

“Are you scared?” WISN 12 News’ Joyce Garbaciak asked.

“I’m not right now,” Battista said. “I know I’ll get a little bit scared, but thinking about the outcome and what this is doing gets me through it.”

It will make life so much easier for Lyla.

“Adult kidneys do fit in children,” Carreyn said. “So the whole kidney will go in. They don’t remove the nonfunctioning kidney, so Lyla will have three kidneys. Outcomes for recipients are better when the organ comes from a living donor versus a deceased donor.”

“I’ve had people say, ‘What if one of your kids needs a kidney?’” Battista said. “I can’t live in the ‘what ifs.” I’ve been blessed with this opportunity. I’ve been blessed to be able to do this, and I’m so ready to save her life.”

Years ago Battista’’s uncle, her godfather, received a kidney from a living donor when he needed one. Battista said she wanted to do the same for another family in need.

Wanting to somehow thank Battista, Carreyn wrote to Ellen DeGeneres, who, in turn, had them on her show in October. Ellen also had a little surprise for Battista, who’s a huge fan of Green Bay Packers quarterback Aaron Rodgers.

Read more at the source.

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