Published: August 5, 2024 | Updated: August 19, 2024
According to Brittany Ramsey, her daughter, 3-year-old Datura “Dayday” Matherly, is the “happiest child in the world.” DayDay, from Russellville, Kentucky, has Angelman syndrome, a rare neuro-genetic disorder.
Dayday was diagnosed around her first birthday. According to the National Institutes of Health, Angelman Syndrome affects fewer than 50,000 people in the U.S. Those who have it require continuous care. Most have a normal life expectancy, and treatment focuses on managing medical, sleep and developmental issues.
“Dayday has some muscle issues,” Brittany said. “She gets really stiff sometimes and will move without knowing that she’s moving.”
That can make everyday activities more challenging.
“We have to plan ahead to make sure we have everything, including her wheelchair, and extra help to support me when we leave the house,” Brittany said. “It’s hard to go out by myself with Dayday.”
Dayday was diagnosed by Christopher R. Barton, M.D., a pediatric neurologist at Norton Children’s Neuroscience Institute, affiliated with the UofL School of Medicine, after continued growth and developmental delays.
“Brittany came to me with concerns about Dayday’s developmental delays and possible seizures,” Dr. Barton said. “After learning the depth of concerns, we quickly moved to testing. As suspected, Dayday was diagnosed with Angelman syndrome.”
Dr. Barton’s love for helping others with Angelman syndrome is personal. He lost a cousin to the disease years ago.
“My cousin was diagnosed with Angelman syndrome when I was in high school,” he said. “Then in my first year of medical school, she passed away at 7 years of age from complications related to epilepsy.”
Now, he uses his family’s tragic loss to help others and care for those facing neurologic conditions and neuro-genetic disorders. It’s something that parents like Brittany really appreciate.
“To have a doctor honestly relate to you and have somebody within their own family with this disorder is comforting,” she said. “Dr. Barton truly understands what I go through every day, because he’s witnessed it himself.”
Fortunately Dayday receives most of her care close to home. She sees Dr. Barton and his team at the Norton Children’s Outpatient Center – Bowling Green.
The offices, located at 615 E. Seventh Ave., will further streamline care for kids in the region, while also increasing offerings for adults seeking treatment.
Because of the work of Dr. Barton, Brittany, and the bond DayDay has with her sister, Gracey, Dayday lives a life of happiness, often laughing and smiling.
She doesn’t let Angelman syndrome get in the way of her greatness.