MONROE, Ga. (FOX 5 Atlanta) - A Florida family is working to turn their pain into purpose after the death of their newborn son. Parker Archie lived 2 1/2 months, but he was only expected to live a few hours.
Parker was diagnosed with Trisomy 13, or Patau Syndrome, in the womb. Now his family wants to help other parents dealing with the same thing by starting a group called Parker's Promise.
Families confronted with this diagnosis are many times faced with tough decisions to either terminate the pregnancy or face an unknown set of circumstances. Trisomy 13 is a chromosomal disorder that causes severe disabilities and birth defects. It also comes with a very short lifespan: 80 percent of babies with it die before they're 1 month old.
"I remember laying on the operating table, because I had to have a C-section, and I was just praying … 'God, please just let me hear him cry. I just wanted to hear his cry,'" Ashley Archie recalls.
While pregnant, Ashley was told her unborn son likely had Trisomy 13. On July 23, Parker Lee Archie was born in Orlando. Ashley and her husband, Chris, got to hear that cry they were hoping for.
"When he came out and he was crying and he was able to breathe on his own, that was an answered prayer right there," Ashley said.
Parker surprised even the doctors. He spent a couple of weeks in the NICU, but was then able to go home with mom, dad and big sister Presley.
"He was just always happy, always smiling … even when he was in the most difficult pain, he just always had a smile on his face," Ashley said.
Parker lived 2 1/2 months, dying in his family's arms on Oct. 6.
"He was our little superhero, and he fought and he had a lot of strength in him," Ashley said.
Through their heartache, the Archies are now hoping to help other families confronted with this frightening diagnosis.
"It’s scary; it’s unknown. You don’t know what’s going to happen," Ashley said. "You don’t know if the baby will make it to full term, you don’t know how long your baby will survive…some live just a few hours, some live a few weeks, some a few years."
After a successful charity concert in Georgia last year for a young girl fighting a life-threatening genetic disorder, Nashville musician Lawson Bates is coming back to Georgia to help the Archie family raise money and awareness for Parker's Promise.
"To see their strength and positive outlook through this, and in hearing their story, it inspired me," Bates said.
Bates comes from a big family. He and his 18 siblings are featured on the show "Bringing Up Bates."
"This family has been through so much, and I can’t even imagine. I’ve had little siblings that had medical issues that were in ICU for different situations for a short period of time, but to lose a child is just the most heartbreaking thing you could ever fathom," Bates said.
"We just want to be able to be there alongside other families, no matter how long they have their child and just help them and comfort them," Ashley said.
Now their extended family in Fayetteville is hoping the community packs the church full of love and support for a fun concert with a purpose.
"Just to see people coming together to be a part of a good cause ... I think in today’s environment, you have so many toxic things politically, socially," Bates said. "Everything is divided, but when you have something like this that’s bringing people together – that’s what it’s really all about."
The concert is Friday, June 14 at Legacy Christian Church in Senoia. Tickets start at just $14 for adults and can be bought here.
The family has also started a GoFundMe page to raise money for Parker's Promise, for those who want to help but can't make it to the concert on Friday.
For more on the Parker's Promise foundation, visit the group's Facebook page.