LOUISVILLE, Ky. — A Kentucky baby’s family is raising awareness about her rare lung disease.
Four-month-old Cora Anne has a disease called Surfactant Protein-C Deficiency.
Her pulmonologist at Norton Children’s Hospital says she has a genetic mutation that’s never been reported in anyone else. They believe the gene is responsible for the lung disease Cora has been fighting since shortly after she was born.
Surfactant Protein-C Deficiency makes it hard for Cora to breathe. She’s on oxygen 24/7.
The work it takes to breathe expends so much energy that she also has a feeding tube to keep her calorie count high enough.
One of Cora’s pediatric pulmonologist at Norton Children’s Hospital, Dr. Adrian O’Hagan says for babies like Cora with this lung disease, “It’s hard to know what the future holds. It turns out that every kid that has Surfactant Protein Deficiency sort of writes their own story, so to speak. I’d say the vast majority of them do get better over time.”
That’s why Cora’s grandparents, Alisha and Del Sizemore, travel long hours to get her the best care possible—in hopes of the best possible outcome. They live in Marion, Kentucky, approximately three hours away from Norton Children’s Hospital in Louisville.
They’re getting a routine down with several specialists who make up Cora’s care team after doctors in their part of the state failed to diagnose the baby.
“There are so many doctors and nurses and even her pediatrician that aren’t aware of this lung disease,” Alisha Sizemore said. “They don’t know enough. There’s not enough data to go off of. So finding a pulmonologist close there at home is just, they have no idea on what to even look for.”
When she wasn’t getting the help she needed near home, Cora had to be flighted to Norton Children’s twice. Now, her doctors in Louisville are working with a team at the University of Colorado to get second opinions on Cora’s case and study her progress.
Cora’s grandma is sharing her story online. Alisha Sizemore has learned to use TikTok to share videos of Cora and also posts updates on her journey on Facebook.
“I feel like I fought so hard to get somebody to listen to me and be aware that there was something wrong. And I just feel like if I could reach one person that is struggling with something like this as well, then maybe just that one person it might help,” Alisha explained.
The grandmother added she hopes all the support she’s seeing online will help Cora, as well. The family has established a GoFundMe page for medical expenses. Alisha Sizemore is also asking people to pray for the baby girl.
“The main thing I want is prayers for her,” Alisha Sizemore said. “If somebody could just take two minutes of their day and say a prayer for her, then I would be happy.”
The Sizemores say they have big dreams for Cora to grow up and eventually be healthy. They’re staying positive hoping her lungs will outgrow the disease.
In the meantime, Alisha Sizemore says, “I feel like every baby is born for a reason, and I feel like maybe this is Cora’s reason, is for her to bring awareness—and maybe to where there’s more studies done, there’s more doctors that are learning in school.”
The Sizemores hope that as Cora’s case is tracked by the University of Colorado, it can lead to better testing options to diagnose other children with the same disease. Cora had to undergo surgery to have a lung biopsy for her diagnosis at just three-months-old.
Cora’s grandparents were excited to report that she received several good reports from her specialists during her most recent visit to Norton Children’s Hospital in January.