Summary
A toddler named Cecilia, who lives in Louisiana, has a rare genetic condition called CDKL5 deficiency disorder (CDD), which causes her to have developmental delays and experience extreme sleeping patterns, including sleeping for 24 hours straight. Her adoptive mother, Melinda Collier, explains how the condition affects Cecilia’s daily life, development, and the family's coping strategies.
Key Facts
- Cecilia has a condition called CDKL5 deficiency disorder (CDD) that affects development and sleep.
- CDD can cause seizures, developmental delays, and sleep disturbances.
- The disorder affects about 1 in 40,000 to 60,000 live births.
- Cecilia sleeps for 24 hours straight, about four times a month, and then stays awake for 24 hours.
- She has been seizure-free since May 2025 but still faces other challenges.
- During her 24-hour naps, she might wake briefly but needs to be fed and changed.
- Cecilia’s development is similar to that of a 7-month-old, even though she is 22 months old.
- Her family supports her needs with patience, adapting to her unique sleep and activity patterns.
