GA girl born with rare genetic disorder fighting for her life
COVINGTON, Ga. - A young, local girl is fighting for her life after being born with a rare genetic disorder. Now, 3-year-old Arria Ingram's community is rallying around her family as they put on a charity concert with the help of a musician and reality TV star.
The Ingram Family has been through the wringer since Arria was born. The toddler has lost most of her right leg to amputations. Despite the surgeries, the fast-growing tissue is aggressive and is still threatening to shut down her organs and take her life.
Now, the Ingrams are struggling to balance a horrible reality, to continue to try and move mountains to save their daughter or let her enjoy the time she might have left.
In many ways, Arria Ingram is your typical 3-year-old girl.
"So you love makeup?" Good Day Atlanta's Katie Beasley asks her. "...and blush," nods Arria.
The bright smiling toddler is up on the latest TV shows (like Peppa Pig, Paw Patrol and Doc McStuffins) and loves playing with Barbies.
"My Barbie stuff and my Barbie house. I have a Barbie house in my room. Mommy gave me that from Toys R Us," she smiles.
But, unlike most kids her age, she's faced a tough uphill medical battle. Arria was born with a genetic mutation that causes her right leg to grow too rapidly.
"Arria's [mutation] happens to be the one that comes up the leg, her foot was way too large they had to take it, and then it just keeps overgrowing," explains her mother, Kallie Ingram. "It's up through her pelvis. It's a benign fatty tissue that's grown up and it's moving her organs between her pelvis and her abdomen and it's pushing them out of the way."
Right now, the family's only hope is with trips back and forth to Boston at least once a month.
"The hope is that this chemo will help to slow it down but it's brand new. She's the first one in the United States to do this trial chemo," explains Kallie.
"It's hard for Arria because she's just 3-years-old and she's having to get on these planes and go back and forth to hospitals, getting IV's or getting blood drawn, it gets exhausting and tiring," adds her father, Brian Ingram.
It's also been hard for Brian and Kallie financially. They're both working full time. He's a Gwinnett County firefighter, and she's a local esthetician.
"Anytime we've ever been in need or felt alone or we're struggling through something, it's like God always provides something, something that we need. Whether it's finances, whether it's just prayers, whether it's just love, it's always been something that God's given us to help us get through whatever time we're in," Brian says.
Right now, that support is coming in the form of a big charity concert, organized in part by the City of Monroe Fire Department.
"It just struck me in the heart and I really wanted to be involved. I love the community outreach," says Captain Jack Armstrong, with the City of Monroe Fire Department.
Lawson Bates, a Nashville musician and one of the stars of the reality show, Bringing Up Bates heard about Arria and wanted to help.
"I'm pumped. I can't wait to have the band here and just have a good time and support something that's really worth supporting," Lawson Bates says. "I'm proud to be a part. This is what I love and what I'm passionate about."
“We're really going to show what this community here is about. I'm so proud and it's going to be fantastic,” adds Captain Armstrong.
Most important of all, Arria is excited.
“She's excited about being up on stage. She’s like, ‘its for me?’ I'm like, ‘yea...it's for you,’” says Kallie.
Meanwhile, this family is just thankful for the support for their little girl. “I think we just feel surrounded by love and completely lifted up by the community and everyone around us,” Kallie adds.
“You look around at all this and what people are doing for us and you can't say there are not good people out there because there are a lot of good people,” says Brian.
Arria will turn 4-years-old this summer and she's already planning her Honolulu themed birthday party. She wants everyone to wear a grass skirt and coconut bra.
The Ingrams are scheduled to go back to Boston two more times before the end of the month for more treatments and scans.
The concert is this Saturday, May 19 at 7 p.m. at Lighthouse World Outreach Center in Monroe. Tickets can be purchased in advance at http://lawsonbates.com/tour/georgia-charity-concert/ and will also be on sale at the door.
If you’d like to help but can’t attend the concert, the family’s Go Fund Me page is: https://www.gofundme.com/adrias-medical-fund
Arria’s family has also set up a Facebook Group, “Arria’s Legacy,” to send out medical updates: https://www.facebook.com/groups/2156779917884953/