Georgia girl with rare genetic condition still fighting
COVINGTON, Ga. (FOX 5 Atlanta) - In 2018, FOX 5 introduced you to a young girl who is battling a genetic disorder that threatened to shut down her organs. A year later, little Arria Ingram is still fighting, and her family says she's been doing much better.
Arria was born with a rare disorder that causes one side of her body to grow too large and too fast. It has already taken most of her right leg.
A charity concert last summer raised thousands of dollars for Arria and her family, as they traveled to Boston each month for experimental treatments.
Now 4 years old, Arria is a happy young girl who is full of life, loves to dance, and wants to play softball, but her small body is fighting an uphill battle. The trial drug in Boston has been helping to stop the growth that's threatening to shut down her organs.
"Everything looks stable based on the last MRI. It's not any bigger or smaller. Her quality of life has increased by far. She's able to use the restroom and eat things that she wasn't able to before, which is the big change," said Kallie Ingram, Arria's mom.
MORE: Georgia girl born with rare genetic disorder fighting for her life
"It's pink, purple, and blue," Arria said to describe her better-fitting prosthetic, which is designed for a princess.
Arria is doing better, and for now, she's able to just enjoy being a 4-year-old.
"Everyone wants to see their kids play and enjoy their childhood, but having it stable and not pushing on her organs is more than we could have asked for at this point," Kallie Ingram said.
Last May, people packed a charity concert in Monroe featuring Nashville musician Lawson Bates from the hit family show "Bringing Up Bates."
"We had such a successful benefit show for her and raised far more money than we could ever have imagined," Bates said.
The money helps to pay for trips back and forth to Boston as Arria continues treatment, but the most powerful part of the concert was the love this family felt.
"It was amazing to have the support and to feel the love. We had gotten to a low, desperate point of feeling alone, and it completely changed that," Kallie Ingram said. "Just the love and support meant just as much as the financial support of it all."
Arria still has another leg surgery on the horizon, and in the meantime, her family is hoping the FDA will approve this trial drug that appears to be helping her. They've already extended the trial one time.
In the immediate future, Arria is focused on being a big sister. She has a new baby brother who was born Monday night.
If you want to keep up with Arria, her mother updates a page on Facebook named "Arria's Legacy." There's also more information on it about a charity bike ride for Arria coming up in September on her GoFundMe page.