It’s a dilemma that keeps Smyrna resident Shannon Cloud up at night: Who will care for her adult daughter when she and her husband die?
Though Alaina Cloud just turned 19, she requires around-the-clock care because she has a rare form of epilepsy that stunted her development from the age of 4. Alaina can’t ever be left alone, Cloud said, because aside from the developmental deficit, she suffers seizures due to a rare condition known as Dravet syndrome.
“It’s scary not to know what comes next,” Cloud told The Atlanta Journal-Constitution.
Families like the Clouds care for an estimated 20,000 people in the U.S. who have Dravet syndrome, according to Stroke Therapeutics. Dravet causes seizures, usually beginning between the ages of 12 months and 4 years of age.
Cloud says families in Georgia caring for dependent adults with Dravet and other disabilities like Down syndrome and cerebral palsy are being left alone because the state’s system for serving these people is in crisis. Parents and service providers say more state funding is needed to prevent a system collapse, the AJC previously reported .