Rynli Harris is a diminutive 2-year-old who likes asking for second helpings and loves her big brother Gavin.
Now that the ventilator is out of her throat, she can add to her vocabulary, which includes ”Mama,” “Daddy,” “blanket,” “bottle” “Nanna,” “No!” and “more.”
“Nanna” is her brother Gavin. “More” is what she says when the cereal is “all gone.”
“Thank you” is what her parents, Tamara and Justin Harris, say on a daily basis as tiny Rynli dodges one health calamity after another and survives another day.
Each obstacle Rynli surmounts brings her one moment closer to facing her biggest medical challenge: Rynli needs a new heart.
Donors are rare, and the wait for a transplant might take six months to a year. While Rynli has been in the ICU at Children’s Healthcare of Atlanta since September, her parents and five siblings have had the opportunity to stay together, and stay close by, in housing provided for transplant patients by the Jeffrey Campbell Evans Foundation.
Credit: Harris family
Credit: Harris family
With two bedrooms and two baths, even at 1,200 square-feet, the apartment is a tight squeeze for two adults and five kids. But it has allowed the family to stay together in the holiday season, instead of having the kids back at home in Dahlonega with one parent.
Because of coronavirus restrictions, that solution might have kept the full group from seeing each other at all.
“That much larger separation would make things so much harder than it is,” said Tamara Harris, 36, as she cradled a slightly fussy and very hoarse Rynli in her arms. “We can still see each other and be a family.”
Heading into the Christmas week in an intown apartment instead of at a North Georgia mountain home might sound kind of sterile.
But Mary Evans, executive director of the Evans Foundation, has taken pains to make the place welcoming. Like all seven apartments provided by the organization, it is furnished with everything from hand towels to muffin tins. There were even stockings on the mantlepiece and a fully-decorated (artificial) Christmas tree in the closet, waiting to be tugged out.
“I have a strong passion for the caregiver because I walked in those shoes,” said Evans. She and her husband, Bob, started the foundation after their son Jeffrey died at age 26 while waiting for a heart transplant.
Searching for a way to come to grips with her grief, Mary decided they could help other families who also wait. “This has become my happy ending,” she said. “I believe Jeff is looking down, happy with what his parents and his brother are doing on his behalf. This is his legacy.”
For many families, including the Harrises, the full cost of the lodging is covered by the Georgia Transplant Foundation, a non-profit that helps pay non-medical costs that often send transplant patients into a financial tailspin.
“It’s the additional costs that hit people between the eyes,” said Georgia Transplant Foundation executive director Pat Rotchford. Supported by grants from the Carlos and Marguerite Mason Trust, the foundation underwrites such expenses as lodging, some medicines, utility bills — they’ll even take care of a missed house payment.
As of September 2020, there are 109,000 people on the transplant waiting list in this country, according to the U.S. Government Information on Organ Donation and Transplantation.
That includes 5,000 Georgians. It is estimated that 1,000 Georgians will die before receiving an organ. Dr. Jonathan Hundley, surgical director of kidney and pancreas transplantation at Piedmont Transplant Institute, said there are not enough donated organs to supply demand.
“There are three ways to increase the number of organs available,” he said. “Convince people to become living donors, increase consent rates for deceased donors and increase the number of organs transplanted from each authorized deceased donor.”
The assistance for transplant patients from the Georgia Transplant Foundation is a godsend for patients who may well incur costs of $500,000 to a $1 million for a heart transplant, according to Dr. Chad Mao, medical director of the advanced cardiac therapies program at CHOA.
Credit: Harris family
Credit: Harris family
For Rynli, surviving a transplant will be dicey. But first, she must get healthy enough to undergo the operation.
The odds have been stacked against her since she was born with cardiomyopathy and left on the steps of a Chinese hospital. Tamara Harris said the nearby orphanage didn’t plan to treat her illness. “They were more or less going to keep her comfy until she passed.”
Instead, the Harrises brought her home. (She would be their second adoption from China. The Harrises first made the trip in 2018 to bring back Elijah, now 15.)
Rynli did well with medication, until this past September, when her health declined, and she was admitted to Children’s. Since then she has adjusted to an internal artificial heart, which was unsuccessful, necessitating an external artificial heart; she’s experienced cardiac arrest, a mini-stroke, kidney failure and dialysis, then a common cold which led to a lung infection and intubation.
Several times they prepared to say goodbye to their little girl. Each time she came back. The ventilator is out, Rynli could go off dialysis soon, and she is getting stronger. “We’re almost there,” said Mao. “One of the luxuries we have in pediatrics is that children are very tough. They are. They have an amazing way to rally.”
Credit: Steve Schaefer
Credit: Steve Schaefer
Justin Harris, 37, who works in temperature-controlled logistics, said, “The story’s not done yet. We’re optimistic. We keep saying to ourselves: Win the small battles every day and perhaps we’ll win the war.”
The fact that they can’t be home for Christmas, and that they can barely fit any presents inside the apartment, isn’t as important as the fact that they are together, said Tamara.
“We look at every day as a gift,” she said. “You really realize what’s important, and to really not take those moments for granted, with any of our children.”
She and her husband each take 24-hour shifts staying with Rynli in the ICU. Then each night, both parents join the kids — Daniel, Gavin, Elijah, Emory and Easton — and have dinner together in the apartment at shift change.
“It’s hard; it’s definitely hard,” said Tamara. “It’s all in where you put your eyes, what you choose to think about, what you choose to perceive. We’ve chosen to keep our eyes on what God has provided. The many miracles. We know how blessed we are.”
