Rett Syndrome Awareness: River Parishes mother supports new statewide proclamation

Published 12:00 am Saturday, October 12, 2019

LAPLACE — October is officially Rett Syndrome Awareness Month in the State of Louisiana, thanks to the efforts of LaPlace native Pam Brady. Governor John Bel Edwards recently signed a proclamation that highlights the importance of continued research for the condition.

Brady is the mother of 7-year-old Penelope “Penny” Brady, who was diagnosed with Rett Syndrome after she began to regress in verbal and fine motor skills at 18 months old. Penny will soon participate in a medical trial that seeks to lessen the severity of Rett Syndrome symptoms.

According to the proclamation, Rett Syndrome is a rare postnatal genetic neurological disorder that occurs almost exclusively in females. Every two hours, a girl is born with Rett Syndrome, though symptoms do not typically appear until 6 to 18 months old.

Acquired motor skills are lost after the onset of Rett Syndrome. This may lead to lifelong impairments including loss of speech, seizures, scoliosis and irregular breathing. More than half of the children diagnosed lose their ability to walk.

The gene that causes Rett Syndrome has been discovered, and there is a theory of reversibility of the disease.

“…We now reach an unprecedented and historic moment in time where we must do everything possible to fund truly life-changing research in front of us,” the proclamation reads.

“It is important to continue our efforts in bringing awareness to the medical community, therapists, teachers, caregivers and the general public.”