Toddler’s 24-Hour Naps Unveil Challenges of Rare Disorder

Parents often rely on intuition to gauge their children’s sleep needs. For Melinda Collier, however, the situation is far more complex. Her 22-month-old daughter, Cecilia, experiences sporadic 24-hour naps due to a rare condition known as CDKL5 deficiency disorder (CDD). This genetic disorder, classified as a developmental epileptic encephalopathy, affects 1 in every 40,000 to 60,000 live births, according to the National Organization for Rare Disorders (NORD).

Cecilia was diagnosed with CDD when she was just a few weeks old. Her adoptive mother, Melinda Collier, 34, from Louisiana, explained that the condition has led to significant developmental challenges. “Her development aligns with that of a 7-month-old,” Collier stated. The toddler struggles with low muscle tone in her core and shoulders, which has hindered her ability to explore independently or self-feed. Recently, she has made progress, managing to sit unassisted for short periods and beginning to bear weight on her legs.

Despite these challenges, Cecilia has been seizure-free since May 2025. However, her sleeping patterns remain unpredictable, with her experiencing a “24-hour nap” approximately four times a month. These lengthy sleep episodes occur without warning, and Collier has learned to recognize the signs when Cecilia falls asleep immediately after breakfast and fails to wake up after her usual morning nap.

“Our day starts with waking up, changing her diaper, and taking medicine with her breakfast,” Collier described. “If she wants to nap afterward and sleeps longer than usual, I start to suspect it’s a 24-hour nap day.” During these extended periods of sleep, Collier and her husband maintain a normal routine while keeping a close watch on their daughter. They often use the time to catch up on household chores, and when they venture out, they take Cecilia along in her car seat, allowing her to continue sleeping.

Cecilia may wake briefly during these 24-hour naps, but she typically needs to be gently roused for feeding and changing. “She doesn’t like being woken up and can be a bit of a grouch,” Collier said, adding that she employs humor and encouragement to help her daughter transition back to sleep after necessary care.

Once Cecilia awakens from her marathon nap, she remains alert for the next 24 hours. Collier notes that her daughter is usually energetic and excited at first but tends to become cranky after about 16 hours of wakefulness. “By the end of her awake period, she fights sleep,” Collier explained.

The unpredictability of Cecilia’s sleep and wake cycles poses unique challenges for the family. Collier emphasized that CDKL5 impacts children in various ways; some may achieve developmental milestones at a more typical pace, while others face more significant hurdles. “It’s a good reminder that all abilities deserve compassion and understanding,” she said.

Collier’s commitment to advocating for children with CDKL5 has been fueled by her experiences. A neurologist’s discouraging remarks about Cecilia’s future spurred her to raise awareness about the disorder on social media, particularly on TikTok, where she shares insights and experiences under the handle @melindacollier91. Many of her videos have gained traction, providing hope and support to other families navigating similar challenges.

Through open adoption, Cecilia maintains a loving relationship with her biological parents, whom Collier refers to as her first parents. This connection is crucial for Cecilia’s sense of belonging and support. “I want parents to never lose hope,” Collier urged. “Cecilia’s life and testimony are worth sharing and proving that you can’t and shouldn’t chalk up someone, let alone a child, as a lost cause.”

As a mother of two daughters with rare genetic disorders, Collier encourages other parents to be their children’s strongest advocates. “Don’t let anyone tell you your child can’t or won’t,” she said. “You are your child’s best advocate and the one who is going to fight for them.”

Cecilia’s journey underscores the importance of resilience and advocacy in the face of adversity, reminding us that every child is inherently valuable, regardless of their abilities.