(FOX 56) — Three girls from Monticello have become an inspiration far beyond their hometown for holding onto family and faith in the face of a rare and chilling medical diagnosis.
Harper, Haisley, and Hope Shearer love spending time together like ordinary Kentucky sisters. Their laughter is contagious, and their smiles brighten any room they enter.
Each of the girls is living with one of the rarest genetic brain disorders on the planet, known as TBCK syndrome. But their story is about faith, community, and their family’s mission to help others.
“When you’re looking at approximately 170 cases in the world, and then you’ve got three cases here in a population of 5,000 people, you’re messing with some pretty rare statistics at that point,” Dr. Dustin Wells, an emergency care physician in Wayne County, told FOX 56.
Nikki Shearer, mother to the three girls, spoke with FOX 56 to reflect on when she first learned about her children’s diagnosis.
“I felt like our world just came crashing down. But then at the same time, our community knew that there was something, like they knew our girls had needs,” Nikki said. “When we found out that diagnosis and we told our community about that diagnosis, we had so much people even strangers we don’t know like support us, buy shirts, and just rally around us during that time.”
Nikki and Trevor Shearer took the girls to different medical specialists over the course of multiple years, trying to find the root of their symptoms, before genetic testing finally gave them an answer.
Much of the girls’ specialized care comes through Cincinnati Children’s Hospital, but when emergencies happen close to home, every second matters.
That’s when the family turned to Wayne County Hospital and counted on emergency physician Dr. Wells.
“We can call the hospital and be like, ‘Hey, one of the Shearer girls are on their way; they’re seizing or she just needs extra support, and they are ready,” Nikkis said. “They don’t know how to deal with the pediatrics because they don’t have that equipment, but at the same time they have made it work, and they have literally saved our daughters and got them stabilized so we could go to Cincinnati Children’s.”
Throughout the tribulations of getting their daughters the care they need, Dr. Wells said the Shearers find time to give back.
“They’re wanting to raise money so we’ll have better pediatric equipment and better capabilities for other kids not just their own,” Wells said. “I think it’s a very admirable thing.”
The Shearers are also raising money for the Wayne County Hospital to ensure other children get the best care possible when they need it most.
Life for the Shearer family brings unique, sometimes dreadful challenges. But the family said they found strength in faith while working to spread awareness of TBCK.
“They’re here for a reason,” Nikki said. “We’re their parents for a reason. God chose us, and we find that as a blessing. We wouldn’t change who they are.”
A GoFundMe for the family to raise money to improve pediatric care in Wayne County can be found here.