Mary Ashley Barbot shrieked “Daddy, Daddy!” and bounced over to her father as he walked in the front door.
How to help
Anyone interested in learning more about donating a kidney can call Sara Stello with the MUSC Transplant Center at 843-792-5097 or 800-277-8687.Anyone interested in donating money to Mary Ashley Barbot’s family or MUSC Children’s Hospital’s effort to establish a dialysis clinic for children can make checks out to “Ashley River Creative Arts School” and put “MUSC Children’s Hospital” or “Mary Ashley Barbot” in the memo line. The school’s mailing address is: 1871 Wallace School Road, Charleston, SC 29407.To learn more about Mary Ashley or contact her family, go to maryashley.org.
Chip smiled, teasing his blue-eyed 10 year-old and kissing her on the forehead.
“Every time,” Charlene, Mary Ashley’s mother, said as she watched. “Loves Daddy. Daddy gets the biggest reception.”
“No matter how long I’ve been gone,” Chip said. “She’s always like this. … To be perfectly honest, she is no fool. When she’s sick, (she wants) nothing to do with Daddy. You’re less than useless. But when it’s time to play or get silly, that’s all me.”
The Barbots are grateful to see their daughter so full of energy and life. Mary Ashley has spent more than her fair share of time in hospitals, and the past few months have been particularly rough.
Mary Ashley needs a new kidney; her lone malfunctioning kidney has kept her out of school and in bed for months.
Until she started dialysis a few weeks ago, she hardly talked, ate or moved.
In many ways, she’s just like any of the other more than 80,000 people nationwide who are on a kidney transplant waiting list, which has doubled in size during the past decade.
In other ways, this bubbly and spunky third-grader has set herself apart, so much so that she’s won the hearts of her classmates and teachers at Ashley River Creative Arts Elementary.
The school community has rallied to her support, and on Friday, it held a March for Mary Ashley. The entire student body took turns walking around the school in her honor. They raised more than $7,000 to support the family and to help MUSC Children’s Hospital’s effort to establish a dialysis center specifically for children, which doesn’t exist in South Carolina.
“This has been wonderful,” said Cathie Middleton, the school’s co-principal. “It’s not the most money we’ve ever raised, but it’s certainly been one of the most special (efforts) because it’s someone we know and love.”
Problems from the start
Chip, who works in customer service, and Charlene, a nurse, settled in Charleston in 1998. Within a month, they’d bought a house and were expecting a child. First came Dalton, who’s 14, and then Allison, who’s 11. Then Mary Ashley.
She was born with congenital nephrotic syndrome, which means she has an abnormal kind of a protein that is needed for her kidneys to function normally. This disorder causes many children to die within the first year.
Mary Ashley spent more time in the hospital than out of it for the first two years of her life. She was 6½ pounds when she was born, and 9 pounds on her first birthday. At one point, she was on about 45 medications.
Complications from her disorder ended up causing neurological problems. Mary Ashley’s kidneys couldn’t distinguish between the good and bad in her body, so she also had nutritional deficiencies. And, before her transplant, her heart stopped beating when she was in the intensive care unit. That led to developmental delays.
She had a kidney transplant before she turned 2, and her family didn’t think she’d ever be able to talk or walk. But Mary Ashley has thrived. She started walking when she was 5, and “clearly, she learned to talk,” her mother joked.
Mary Ashley wears a hearing aid and glasses, but she’s been able to do what most kids do — run, jump or boss around her older siblings. After learning how to drive a golf cart, she told her mom she needs a car because she could drive, too.
“She puts a lot of effort and energy into life, and she doesn’t really let anything stop her,” Charlene said. “She never complains, even on days I know she doesn’t feel well. She gets up and makes the most of out every day.”
Mary Ashley started getting sick again in December, and her parents learned her kidney was failing. She needs a new one, but because of the antibodies in her system, she’ll only be a match with roughly one out of 100 people.
“It’s going to be a difficult match,” Charlene said.
A school rallies
Mary Ashley hasn’t been at school since February, but her spirit has been an inspiration for the school community.
A committee of teachers always is on the lookout for ways to help causes outside of the school. They sell valentines every February to raise money for an Alzheimer’s association, and students brought in more than 51 boxes of soup for its Souper Bowl of Caring.
And two years ago, they organized a run for a kindergartner who had been diagnosed with leukemia.
Teachers had been helping the Barbots, such as bringing meals to the hospital, but they decided to take it a step further. Students were asked to find sponsors for a walk around the school campus, March for Mary Ashley. Some kids ran with the idea.
They canvassed their neighborhoods to ask for donations, and one student raised $247 by putting out a hat and playing his mandolin on King Street. He gave the money to the school’s Mary Ashley and pediatric dialysis clinic fund.
“It is so humbling for adults to do something like that, but for these elementary kids to be doing everything they can to help another child is just amazing,” Charlene said.
On Friday, most in the roughly 600-student school wore green, the color representing kidney disease awareness. With music pumping over loud speakers, students danced and gave high-fives to local mascots who turned out for the March to Mary Ashley.
Co-Principal Jayne Ellicott told students the most important lesson they could learn was to care for one another, and she had a few students explain to their peers how they raised money.
The guest of honor wore a green tiara and corsage, and carried a green pom pom. She beamed as she sat in the donated convertible Volvo that paraded around the school. Every student watched and cheered for Mary Ashley as she passed by, and then took turns walking around the school and clapping for their classmates.
Charlene was in tears almost the entire time. She thanked everyone, saying she was amazed at the effort the school had gone through for her family.
“I am overwhelmed,” she said.
Friends and family of Mary Ashley have volunteered to be screened to see whether they could donate a kidney, but no one has been a match yet.
If Mary Ashley gets a kidney, her health should improve, and her parents hope she’ll be able to have a long, full life.
Until then, she will have to continue dialysis treatments. The longer she undergoes dialysis, the more at risk she is for infections and complications.
Charlene hopes more people will consider getting tested to see whether they could donate a kidney, not only for Mary Ashley but for the other children who need transplants.
She wishes she could take away her daughter’s pain and sickness, but she said she’s grateful for the perspective and blessing it has brought to her family.
“When you go through things, difficult times or challenges, you get an opportunity to see how really good people are,” Charlene said. “Because people have been so kind and so good and so caring. I don’t know if you get that opportunity to see that always until you’re in the position.”
Reach Diette Courrégé Casey at @Diette on Twitter or 843-937-5546.
Mary Ashley Barbot’s mom, Charlene, has been overwhelmed by the outpouring of support from classmates, teachers and administrators at Ashley River Creative Arts Elementary, where Mary Ashley is a student.×
Mary Ashley Barbot laughs as her classmates cheer for her during a Friday parade around Ashley River Creative Arts Elementary in West Ashley. The school raised more than $7,000 for Barbot, who needs a kidney, and for an effort to establish a pediatric dialysis center in Charleston.×
Mary Ashley Barbot waves to her classmates during a march in her honor on Friday at Ashley River Creative Arts Elementary. Mary Ashley has a congenital syndrome that has caused her kidneys to not function normally.×
Mary Ashley Barbot spends time with her mother, Charlene, in the family’s home.×
Mary Ashley Barbot waves to her classmates during a Friday parade around Ashley River Creative Arts Elementary in West Ashley in her honor. The school raised more than $7,000 for Barbot, who needs a kidney, and to help establish a pediatric dialysis center in Charleston.×