Raising Lina: A CDKL5 Deficiency Disorder Story
Marinus Pharmaceuticals and Heartbeat
CDKL5 Deficiency Disorder (CDD) is a rare disease that occurs in approximately 1 in 40,000 births in the U.S. Among the hallmarks of the condition are seizures that begin in infancy and continue through life. Seizures can occur daily and are often severe. CDD patients can experience extreme delays in their physical and mental abilities, and the disease’s impact on patients and their families are significant, sometimes overwhelming, and often in such all-embracing ways that healthy people struggle to fully appreciate.
Believing that CDD deserved a novel approach to storytelling, Marinus Pharmaceuticals and Heartbeat embraced an intimate, emotional, documentary-style approach to share the story of a family caring for a young CDD patient. The storytelling objective was to speak with an honest, clear-spoken voice, and to reveal how more days with fewer seizures expand the possibilities for CDD families.
In early spring of 2022, Marinus Pharmaceuticals and Heartbeat sent their teams down to Front Royal, Virginia to document a day in the life of the Dinescu family. Daughter Lina, a pixie of a 4-year-old, was diagnosed with CDD at only a few months old. The team arrived on a beautiful sunny day, a good day for Lina—not every day is—and they quickly learned that celebrating such a day with CDD is essential.
Their time with the Dinescus resulted in a day-in-the-life interactive, long-form journalistic piece entitled, “Raising Lina.” Inspired by the portraits often found in The New York Times or The Atlantic, they looked to paint an authentic picture of this family. The story was enhanced with candid photographs by award-winning photographer Sophie Ebrard and punctuated by audio clips of Lina’s mother Diana recounting her experience with CDD.
The interactive piece was supported by a multichannel campaign that drove awareness of Lina’s story and helped other CDD families know that they were not alone.
Over a five-month period post-story launch, approximately 40,000 people engaged with the website, with 10,000+ engagements on the Community Stories page—impressive numbers for a rare disease.
Most importantly, individuals close to families with a child with CDD can better understand how valuable good days with fewer seizures are.
