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Only 1% of Population is Match for Teen Needing Kidney

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Monday, July 16, 2018

ATLANTA, GA - “She’s a gift from God,” said Brenda Sharpe.

Sharpe’s granddaughter, Ramonie, has been battling an incurable disease her entire life but remains optimistic.

Ramonie, a 16-year-old junior who attends Duluth High School, was diagnosed with a rare disease called Focal Segmental Glomerulosclerosis (FSGS). It’s a disease that impacts how a person’s kidney functions by attacking and damaging the way your kidney filters and cleanses your blood.

Ramonie was diagnosed with this incurable disease when she was just 20 months old but her grandmother says she was showing symptoms at just 14 months.

She had complete protein loss due to the disease and retained such a dangerous amount of fluid in her body, Ramonie was in the hospital for 90 days.

“She’s been through a lot for such a young age,” Sharpe, Ramonie’s grandmother, said.
Now, at 16 and one kidney transplant under her belt, Ramonie is searching for a second donor.

To add on to her struggles, she can only accept a kidney from one percent of the population due to the complications that are caused from the FSGS.

Ramonie is a patient at Children's Healthcare of Atlanta but is searching for a new kidney through Emory.

“She says it might sound strange but it’s kind of cool that she has to have a match from only one percent of the population. So it has to be a match,” Sharpe said. "Ramonie is O positive but the hospital isn't ruling out by age or blood type in case they have to do a paired exchange to get her a kidney. They rule out people with high blood pressure or who have undergone treatment for cancer. Everyone else they can let know immediately if they can proceed once they answer the medical related questions on the registration form."

Sharpe added, all costs through the process are covered and initial testing can be done wherever they live. Advanced testing is at Emory but travel costs would be covered as well.

To help Ramonie find a second kidney donor, the family reached out to OutFront Media to see if they could negotiate a reasonable price to get a billboard about the need for a kidney donor out to the public.

Now, thanks to OutFront Media, billboards are in three locations around Georgia: one in Cobb County and two in Fulton County.

Despite having numerous infections that could have taken her life, Ramonie remains sprightly.

She works between 20-30 hours a week at Chick-fil-A who, according to Sharpe, are perfectly willing to work around Ramonie’s dialysis treatments, which she has to get 12 to 15 hours every day.

“She always says that God is on her side and no matter what you’re going through you will be okay,” Sharpe said of her granddaughter. “Me and her mother raised her to be that way. Knowledge is power and we were always honest with her.”

From the time she was diagnosed with FSGS, Ramonie is always involved with learning about her treatments and her medication.

“She’s an old soul, out of necessity,” Sharpe said. “She has to deal with so much but she’s very positive and very spiritual.”

A Go Fund Me has been set up to help with medical costs and several family members are being tested to see if they could possibly be a match.

“Although her mother is not a match, we’re still trying to see if we can get tested for the parent exchange,” Sharpe said. This means if Ramonie’s mother is a match for another person looking for a kidney donor who is a match for her daughter, they can do a swap.

“It’s been a long journey,” Sharpe said. “She’s so admirable and has a focused, positive energy.”

"She's such a wonderful student. She was battling an infection and was in the hospital for 30 days and there's a school at the hospital that patients can attend and she was still trying to do her work even though she could barely get out of bed. She wasn't feeling well but she said, 'What if I don't feel better tomorrow. It needs to get done regardless.' So she propped herself up and did her work," Sharpe said.

Sharpe says Ramonie hopes to grow up to be an anesthesiologist and hopes to attend Emory University.

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Author: Hope Ford, Catherine Park
Source: 9 News
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