Lowcountry family looks to others to save their daughter
By Victoria Hansen firstname.lastname@example.org
CHARLESTON, S.C. (WCIV) - She's painfully shy. But when she smiles, it's worth the wait.
Like many 10-year-old girls, Mary Ashley Barbot has a passion for purple and purses. Her room is painted a lovely shade of lilac. Pocketbooks of all shapes and sizes hang from doorknobs and hooks.
But unlike other children, Mary Ashley's room is piled to the ceiling with brown medical boxes. Her dresser drawers are crammed with plastic wrappers, syringes and tubes.
Mary Ashley is sick, very sick.
She has Congenital Nephrotic Syndrome. Simply put, her kidneys failed to work as they should since birth. A transplant saved her life when she was two. But now her body is rejecting that kidney, threatening her life again.
"It is very frustrating ad heartbreaking," said her mother, Charlene Barbot. "Because you know you don't even ever want your kids to have a bad dream."
But this past year must seem like a nightmare.
"One thing Mary Ashley has taught us is you have to deal with the cards that you're dealt," said her father, Chip Barbot.
The cards, at times, appear stacked against them. Since Mary Ashley's already had a transplant before, her body has built up antibodies.
"Unfortunately Mary Ashley has very high antibody levels," said Dr. Katherine Twombley, the Medical Director for the Pediatric Kidney Transplant program at the Medical University of South Carolina. "So it makes it difficult for her to even find a match for a kidney."
The odds of Mary Ashley finding a match are terribly low -- one percent.
Her father wanted desperately to be tested. So he dropped 35 pounds in seven weeks just to meet the health requirements.
The results came back -- he was not a match. The couple's other two children are too young to donate. His wife has health issues.
So what's a family fighting for their precious daughter to do?
Doctors say waiting on a transplant list could take 10 years. So the Barbots are doing all that's left: asking friends and strangers alike to get tested and be willing to donate their kidney. It's not a easy request.
"I wish I didn't have to ask for it," said Chip Barbot. "I wish that I would have been a match or somebody would have been a suitable donor, but it's just not working out that way."
So far, dozens of people have come forward.
"There are people who have been willing to get tested to try to get her a kidney that we don't even know," said Charlene Barbot. "We've been blessed to see the good in people."
Unfortunately, no one has been a match.
But by being willing to donate, many have gone into the National Kidney Registry's living donor exchange program. It's a pool of people committed to donating a kidney. As it grows, so does Mary Ashley's chances of finding a match somewhere else.
For now, Mary Ashley's doctors are doing what they can. She just underwent five rounds of chemotherapy.
"I'm hoping that we can get the rejection under control," said Dr. Twombley. "That way we don't have to take that kidney out because that would be a big surgery for her."
Mary Ashley also gets dialysis at home. Her mother works in the nursery at Roper Saint Francis Hospital. But even she is overwhelmed by the process.
"When you think about people being on dialysis you don't typically think about children," she said.
It turns out, there are no dialysis centers in the area specifically for kids. Charlene Barbot would like to help change that.
"There are actually only a couple of places in the state that will actually even consider doing dialysis on children," said Dr. Twombley.
So every night, Mary Ashley's mother hooks her up to a machine that cleans the toxins from her body as she sleeps. It can be painful at times, but Mary Ashley does not complain.
ABCNews4 photographer Dave MacQueen puts on a fashion show with her purses before she goes to bed. Mary Ashley grins and giggles. It's a smile so contagious we take it with us, thinking about something her father said.
"I look forward to after we find a kidney, to seeing what the next 10 to 20 years bring, seeing how much more she can teach us and learn for herself and see her blossom and become the person I know she can become," he said.
If you'd like to learn more about getting tested for Mary Ashley or becoming a donor, you can call the MUSC Transplant Center at 843-792-4658 or go to their web site www.muschealth.com/transplant.
You can also learn more about Mary Ashley at MaryAshley.org