Woman, 83, Drives 12 Hours Across the Country to Be There for Great-Grandchild During ‘Terrifying’ Medical Procedure (Exclusive)

0Luca George and his great-grandmother, Karen Gaither.Credit: Mariah George“I want Luca to know that his family didn’t just show up when things were hard,” Mariah George tells PEOPLE. “They showed up for the fight for his future, too”NEED TO KNOWKaren Gaither, 83, drove 12 hours from Indiana to Florida to be beside her great-grandson, Luca George, during a major spinal surgery

Her decision to stay at the hospital, even sleeping in a chair, showed the family what it means to truly show up

Gaither’s presence gave Luca’s family comfort during a frightening time and became a memory his mother says they will remember forever

When Luca George went into spinal surgery on July 7, 2026, his family knew there was no easy way to make the moment less frightening. The 4-year-old, who has SPATA5L1-related disorder, an ultra-rare genetic disorder affecting fewer than 100 kids worldwide, also has cerebral palsy, which causes severe muscle stiffness and cramping.

His family had traveled this road of medical uncertainty before, but this procedure was different and Luca’s great-grandmother, 83-year-old Karen Gaither, was determined to be there. After driving 12 hours from Indiana to Florida, she arrived ready to stay by his side, even if it meant sleeping in a hospital chair.

“She didn’t come because there was something she could medically do or because she could make any of it easier. She came because she wanted us to know that we weren’t alone and that Luca had his Mamaw Karen there with him,” Luca’s mother, Mariah George, 28, tells PEOPLE exclusively. “She has 10 great-grandkids, but still made the effort to come across the country for Luca.”

Luca’s surgery was a selective dorsal rhizotomy, known as SDR, a complicated spinal procedure that permanently reduces abnormal muscle tightness that can make movement difficult.

Because Luca’s cerebral palsy causes significant stiffness and cramping in his legs, his care team hoped the procedure could make his body easier to move and position while giving him a better opportunity to participate in physical therapy and strengthen the movement he has.

The procedure, however, is “irreversible,” so George says that she and her husband, Nick, “spent a lot of time weighing the potential benefits against the risks and what it could mean for Luca long-term.”

The mother of one makes it clear that they were not hoping to “fix” their son, but to “make his body work more comfortably for him and give him more opportunities to move, participate and experience life on his terms.”

For George, however, this particular hospital stay carried a different kind of fear than the family’s previous medical experiences — especially given that the surgery wasn’t being done at their usual children’s hospital, and it was longer and more serious than anything Luca had undergone before.

She also knew that because Luca cannot always communicate exactly what he is feeling or needs, she would have to be especially attuned to him throughout the experience. “I knew the surgery was being done to give Luca a better quality of life, but knowing he was going through such a major procedure was terrifying,” George admits.

That was why having family close by mattered so much.

Luca’s grandparents and great-grandmother had planned to travel from Indiana because they knew how significant the surgery was, but Gaither’s decision to stay at the hospital became one of the moments George would remember most.

After the 12-hour drive, Gaither could have gone to a hotel and rested. Instead, she stayed close to her great-grandson, a gesture, George says, captured what showing up for loved ones truly means.

“When you are going through the hardest moments of your life, you notice who checks in, who shows up, who makes the drive, who sits beside you when there is nothing they can do to make things better, and who continues to be there after the crisis has passed,” she highlights.

Gaither’s support has also extended far beyond that hospital stay. She later traveled with the family to Boston for their first SPATA conference, where she even got to see the genetically modified tadpole models being used to better understand SPATA-related disorders.

For Luca’s family, her presence has become part of the larger journey — not just showing up during the hardest moments, but continuing to be there as they work toward his future.

Over time, George says years of medical uncertainty have shown her that some people may not be there when life gets difficult, while others will do everything they can, even if that means sleeping in a hospital waiting room.

“I’ve learned to stop chasing people who don’t show up and to be incredibly grateful for the people who do. Luca has shown me that family isn’t only about who you’re related to. It’s also about the people who choose to stand beside you, especially when things are difficult and there is nothing in it for them,” George emphasizes. “Those are the people I know I can truly count on, and those relationships have become incredibly precious to me.”

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Now, looking back on Luca’s hospital stay, George hopes her son will one day understand just how many people stood by his side as he fought through one of the “hardest moments of his life.”

“More than anything, I hope Luca grows up knowing just how deeply he has always been loved,” George says. “[Our family] drove from Indiana because they wanted to be close to him, to support him, and to support me and my husband through something that was incredibly difficult for all of us.”

And as George and her family work toward a future in which children with SPATA5L1-related disorder have better answers and treatment options, she tells PEOPLE that she hopes Gaither will be there to witness what all of that work can eventually mean for her great-grandson.

“I want her to see that the little boy she drove 12 hours to sit beside wasn’t just someone we were trying to get through a difficult surgery; we were fighting for his future,” George says. “And I hope one day she gets to sit beside him again, not in a hospital chair during a crisis, but celebrating a treatment that we helped bring into existence for children like Luca.”