Rett Syndrome effects approximately 1 in 10,000 female births, one local family shares their story

BOWLING GREEN, Ky. – October is Rett Syndrome Awareness Month, and the parents of a teen with the syndrome are hoping to spread awareness by sharing her story.

Rett syndrome is a rare genetic neurological and developmental disorder that can affect movement, communication, learning and many body functions. 

Kylee, a 15-year-old in Warren County, was diagnosed with the disease after years of doctors’ visits and questions. 

Because of Rett’s, her father says the family has a different lifestyle than other families.

“A lot of the things that most families do, they take for granted. Even just coming out to a playground like this, 90% of the things she can’t, she can’t utilize,” said James Daniels, Kylee’s father.

Rett syndrome primarily affects females, but males can be affected as well. 

The diagnosis is fairly invisible in the child’s first months of life, but then, oftentimes, they will begin to lose skills they had previously learned, such as hand function, communication and walking. 

But, even with communication difficulties, Kylee is a social butterfly.

“To help our family, it’s more of a – talk to her. She understands. She’s there. She enjoys the people. She enjoys being talked to,” said James.

Every person with Rett syndrome is affected differently. 

Kylee suffers from seizures and is mostly tube fed as a result of her symptoms.

“I hope one day they can find a cure so nobody else has to know their child has to go through this because it’s hard. You know, I don’t think people realize how hard it is until it affects them,” said Karen Daniels, Kylee’s mother.

Kylee uses eye-gaze technology to communicate most times, but does get a word out here or there. 

“I love her so much, she’s my heart,” said Karen.

There is currently no cure for Rett Syndrome, but research, symptom management, supportive therapies and advances in treatment offer hope for the future.