BOWLING GREEN, Ky. — Angelman syndrome is a very rare disorder that limits a child’s ability to participate in everyday activities, such as walking or talking. About 500,000 people have it worldwide.
Three-year-old Dayday Ramsey has Angelman syndrome and, according to her mother, Brittany, she is the “happiest child in the world.” Brittany Ramsey said her daughter is one of two children in Kentucky with the disease.
Dayday was diagnosed with the disorder at one. According to the Angelman Syndrome Foundation, it’s a rare neuro-genetic disorder that affects approximately one in 15,000 people. Dayday does not walk, does not speak, and cannot live independently.
Ramsey said, “She has some muscle issues. She gets really stiff sometimes. She will move without knowing that she’s moving.”
That can make everyday activities a lot more difficult.
Ramsey said, “We’ve got to kind of plan ahead, like do I have everything I need for her, do I have her wheelchair, do I have someone to help me because it’s really hard to go out by myself.”
People with Angelman syndrome require continuous care and cannot live independently. They have a normal life expectancy and treatment focuses on managing medical, sleep and developmental issues.
Dayday got her diagnosis from Dr. Christopher Barton, a pediatric neurologist at Norton Children’s Neuroscience Institute, after having issues with growth and development. He was eager to help the Ramsey family right away.
Dr. Barton said, “They come to with concerns about possible seizures. We ended up, because of problems with development and meeting her right away, allowed us to very quickly to get all the testing that we needed to get, and then come up with that diagnosis of Angelman syndrome.”
But Dr. Barton’s love for helping others with Angelman syndrome is not just for the paycheck; rather, his inspiration to help others with the disorder came after losing his cousin to the disease.
“So I had a cousin who was diagnosed with Angelman syndrome when I was in high school. Then, my first year of medical school, she passed away at seven years of age from complications related to an epilepsy,” Barton said.
Now, he uses his tragic loss to help others.
“To have a doctor honestly relate to you and have somebody within their own family with this disorder is comforting,” Ramsey said. “To know that, okay, this guy knows what I go through every day. You know? Because he’s witnessed it himself.”
Because of the work of Dr. Barton, her mother, as well as the bond she has with her sister Gracey, Dayday lives a life of happiness, often laughing, smiling, and filled with excitability.
She doesn’t let Angelman syndrome stand in the way of her greatness.