Meet Angelina. She life shares with her Aunt Terry in the Citizen Care Life Sharing program. Angelina loves pop music and watching movies on her iPad. She especially enjoys sensory Autonomous Sensory Meridian Response (ASMR) videos, her favorites include scratching and tapping sounds.
Angelina lives with Dravet syndrome, a rare and severe lifelong form of epilepsy that usually begins in a baby’s first year of life. Children with Dravet syndrome have frequent, long-lasting seizures that are often hard to control and may be triggered by fever. The condition can also affect learning, behavior, and movement.
People with Dravet syndrome may experience:
- Long and frequent seizures
- Delays in learning and development
- Challenges with movement, balance, and coordination
- Delayed speech and language
- Sensory sensitivities
- Dysautonomia, which can make it hard to regulate body temperature, heart rate, and blood pressure
Treatments are limited, and caring for someone with Dravet syndrome requires constant attention. This can greatly affect the quality of life of both the person and their family. To learn more about Dravet Syndrome visit https://dravetfoundation.org/what-is-dravet-syndrome/
