Mary Ashley Barbot of Charleston was supposed to be in Los Angeles, California this week; not for vacation but for a potentially lifesaving treatment. The coronavirus pandemic put the brakes on her plans and accelerated the concerns of her already worried parents.
The 16 year-old was born with congenital nephrotic syndrome which required she undergo a kidney transplant at just 20 months old. The condition also caused development delays and hearing loss. Mary Ashley's body later rejected the kidney. She's been on a transplant waiting list for seven years.
But a buildup of antibodies has made finding a donor very difficult even though more than 300 people have been tested. The trip to California was an effort to change that. A program at Cedars-Sinai Medical Center helps people like Mary Ashley reduce their antibody levels.
Then, along came the coronavirus and the country came to a halt.
The Barbot family would like to stay home, but they can't. At least three to four times a week, they take Mary Ashley to a dialysis clinic in Charleston where she's hooked up to a machine for four to five hours at a time. It's one of only two clinics in the state that provides such care for pediatric patients.
Her life depends upon it, even if it means potentially exposing her to COVID-19.
"It's a frightening thing," says Mary Ashley's mother Charlene.
"The population in a dialysis clinic is typically elderly," she says. "There are patients coming in from nursing homes."
Charlene is a nurse. She knows if Mary Ashley gets sick and resoures are spread thin because of the virus, her daughter likely won't be a priority.
Now there are reports dialysis equipment is in short supply in hospitals hit hard by the pandemic because critically ill patients are suffering kidney problems.
So, Charlene began trying what she's tried many times before, to get Mary Ashley on home dialysis. The concern has been, is it safe? Can Charlene do at home what just two clinics in the state perform?
She reached out to Nelson Amos, a patient consultant with NxStage Medical. The company leases equipment for home dialysis.
"It really just kind of touched my heart," says Amos. "You know, I wanted to do everything I could."
Amos is also a dialysis patient. He had a kidney transplant but suffered complications about six months ago. He's seen a spike in the number of patients requesting home dialysis training in just the last month.
"You know with this entire pandemic, I just thank God that I don't have to go to a dialysis center," he says.
Amos sympathized with the family and immediately started researching ways to quickly and virtually train Charlene how to use the machines. He thought she'd have no problem since she already works as a nurse.
Then Amos heard from Mar Pidlaoan, the Area Operations Director of Dialysis Clinic Inc. in Charleston where Mary Ashley goes. He's also a former nurse who knows the teenager from years at the clinic. He felt confident Charlene could learn home dialysis.
The problem was support staff. Who would work with Charlene and follow up with the family?
"Through emails, through texting and through phone calls we made it happen," says Pidlaoan.
He could easily have said no. Pilaoan is strapped for staff because of the pandemic and this has never been done for a pediatric patient before.
"I saw a need to act because it was the right thing to do," he says.
Doing the right thing despite and because of difficult times has brought hope to a family.
"Honestly, I'm just feeling gratitude," says Charlene.
Within days, she started training with a nurse at the clinic. Mary Ashley packed her bags for a final visit.
"I'm so happy," she screamed.
Mary Ashley can now truly quarantine. She'll continue her dialysis and search for a kidney transplant from home.