John Johnston reports:
She traveled to Grand Rapids, Mich., the last week of July expecting to compete in 10 events at the Transplant Games of America.
By the time it was over, 12-year-old Asia Werner had won 11 medals.
Yes, 11. Once members of Team Ohio saw how fast she was, they recruited her to run the 4 x 100 meter relay and the 4 x 400 meter relay. She and her teammates earned silver in both.
“It was really cool to go,” Asia said the other day, awaiting the start of her soccer practice.
“The most common question was: What organ did you get?”
Asia’s answer: A heart.
Part of her story has been told before. She was on the front page of The Enquirer on Christmas Day 2000, two days after her heart transplant at Cincinnati Children’s Hospital Medical Center, and three days after her first birthday.
Without the donated heart, Asia, who was born with multiple heart defects, likely would have died within days, the doctor who performed the surgery said.
“We’d already started making funeral arrangements,” said Dawn Werner.
Werner was her grandmother and legal guardian in 2000. She adopted the girl in 2004 and is now her mom.
After the Transplant Games, Werner contacted the newspaper partly because she thought readers might be interested in an update on Asia, and partly because “we do a lot to promote organ donation.”
Nobody is more grateful for that than Mary Hollenback, who lives in Dubuque, Iowa.
Her son’s heart beats inside Asia.
Asia was saved by a little hero from Iowa
His name was Cole. He died at 5 months, and it’s unclear why.
A geneticist theorized he had mitochondrial myopathy, a disease that affects the brain, but it was never confirmed.
As her son’s life slipped away almost 12 years ago, “I looked at my husband and said, ‘I want to make him a hero. I want to donate his organs,’ ” Hollenback said.
But there were complications. Even though Cole had virtually no chance to survive, his brain still showed minimal signs of activity; the hospital staff couldn’t remove life support and allow organ donation to proceed until he was clinically brain dead, Hollenback said.
So the family endured an agonizing wait for another couple of days. “We didn’t even know if there was a (heart) recipient,” said Hollenback.
At the time, she wondered whether the wait was worth it.
“It was worth it,” she said last week. “Asia is living proof.”
A life full of activities
Asia started seventh grade last week at Lakota Ridge Junior School. She’s a percussionist in the band. She takes piano lessons. She plays soccer,and enjoys archery and swimming. She loves “The Hunger Games,” both the book and the movie.
“She’s just a normal kid,” Werner said.
“There’s a lot of doctor visits and tests,” Asia said. “I’m just kind of used to it. Plus, I enjoy getting out of school.”
Rejection of a transplanted heart can become an issue.
In about half of patients, the transplanted heart will fail within 15 years and a new transplant will be needed, according to Dr. Alistair Phillips, Cincinnati Children’s surgical director of pediatric heart transplantation.
Werner still worries, but not like she used to. Years ago, she struggled with whether to buy Asia one of those keepsake albums that has a spot for a school photo every year through high school.
“I did not want to get to the point where I couldn’t fill it,” she said. “Now, I’m convinced I’ll be able to.”
Spreading word about donation
The Werners have a picture of Cole Hollenback in their living room.
The families have stayed in touch for more than 10 years, since Dawn Werner reached out by letter. They’re now connected by Facebook, email and CarePages. They met in person several years ago.
“Our intent is to teach (Asia) that she has a responsibility to Cole, to his family, and that she make the most out of what she was given,” Werner said.
Asia understands. “All (the Hollenbacks) had to do was say no (to organ donation), and I would have died.”
Last year she shared her story with legislators at the Ohio Statehouse. She has met with families who are considering whether to place their children on a transplant list. She volunteers for LifeCenter Organ Donor Network.
And in July, for the first time, she competed at the Transplant Games. She ran and swam and played table tennis, and brought home six gold and five silver medals.
Word of her accomplishments reached Dubuque, Iowa.
“I was proud of her,” Hollenback said.
And hopeful, too, that someone else might be moved to sign an organ donor card.