Strands of pearls and seashells jangle around her neck as Mary Ashley Barbot pushes back her Caribbean blue hair with a bejeweled tierra and talks excitedly about mermaids, queens and unicorns. She’d love to be them all; at once she says. In Mary Ashley’s world, anything is possible.
The 19-year-old from Charleston was born with a rare kidney disorder, congenital nephrotic syndrome, which left her not only in need of a transplant before she was 2-years-old, but hearing impaired and developmentally delayed. She has all the wonder of a child but the tenacity of an adult.
“We were told that she wouldn’t walk,” says her father Chip Barbot. “We were told she would have all kinds of hurdles and she’s overcome them all.”
Those hurdles have been enormous.
Mary Ashley’s body rejected the kidney six years after the initial lifesaving transplant, her family says following complications from surgery. Mary Ashley's chances of finding another compatible donor were less than 1% because her body had built up so many antibodies.
Hundreds of people who’ve heard Mary Ashley’s story have volunteered to be tested as potential living donors. Her family says at least nine went on to donate kidneys to other people, but none matched Mary Ashley.
She’s had to rely on machines for nearly half her life to do what kidneys naturally do, clean toxins from the body. Her family worried, without a transplant, Mary Ashley was running out of time.
“The average life span for somebody on dialysis is not very long and we were there," says Chip Barbot.
So, two years ago, the Barbots turned to a team at the Cedars-Sinai Medical Center in Los Angeles. Doctors there were the first to use a desensitization therapy to lower antibodies and keep them from attacking transplanted organs. It sounded exactly like what Mary Ashley needed.
But the Barbot's new plan was abruptly put on hold. The pandemic halted travel, especially for those who are immune compromised like Mary Ashley. Her family had to fight instead for dialysis at home.
Once desensitization therapy did begin, it was rough. Mary Ashley, who's undergone dozens of procedures and faced countless needles, machines and drugs, was having a hard time. The family wondered if she’d finally had enough. They let her decide and gave her time.
Mary Ashley’s mother Charlene Barbot says they were driving along the Pacific Coast Highway taking in the scenery when suddenly Mary Ashley said, “I need to keep going because I want a kidney. I need to go back.”
They quickly continued treatment to help Mary Ashley’s body accept a kidney if one became available.
In August, the Barbots got the call they’d waited a decade for, a compatible kidney had been found in Philadelphia. They eagerly made plans for surgery in California only to learn massive flight cancellations kept the kidney grounded.
“Obviously, the feeling of unpacking those clothes when you rushed to pack them was not the best feeling in the world.”
Their hope, now fragile, was beginning to crumble.
But a month later, just as classes were letting out in Charleston, Charlene got another call at Mary Ashley’s school where she works as a nurse.
“I got on the computer and was trying to get a flight, but I was in tears and just shaking,” says Charlene Barbot.
“I was trying hard not to really get my hopes up high because it kind of felt like something kept getting in the way.”
But a teacher grabbed a video camera and recorded the moment Mary Ashley learned she was headed to Los Angeles for a possible kidney transplant.
“I’m so excited,” she squealed with a huge, smile.
Within hours, the Barbots were on a plane and Mary Ashley had a new kidney in less than a day.
Dr. Dechu Puliyanda who cared for Mary Ashley expected her to be nervous before the surgery.
“But she had so much faith, so much hope. You know she wanted it to happen,” says Dr. Puliyanda, the Director of Pediatric Nephrology and Transplantation at the Cedars-Sinai Medical Center.
The Barbots admit they were nervous.
“But when we finally saw her and saw the little catheter bag was filling up with urine and it was starting to work, it’s hard to describe what a wonderful feeling that is.”
But the Barbots know that wonderful feeling came at a cost.
“Someone, some family had to have a tremendous loss in order to save our child’s life,” says Charlene Barbot.
The Barbots say they’ll honor that loss by caring for this kidney. Mary Ashley has already given it a name.
“Cupcake,” she says. “Because I love cupcake.”
Every year, for as long as the family can remember, Mary Ashley has wished for a kidney for Christmas. They just got home from Los Angeles in time for Christmas and say they have hope to share.
“This year our hope is that so many others get that Christmas miracle too.”
More than 105,000 people are currently on the national transplant waiting list.
