Meet Stella: The Spark Behind Our Mission

The world welcomed Estelle “Stella” Linderman in November 2019—a bright light with a fierce spirit and a smile that can soften even the hardest day. But just five months later, on April 13, 2020, that light was dimmed by her first seizure. Two weeks later, on April 27, our family was forever changed when Stella was diagnosed with CDKL5 Deficiency Disorder (CDD)—a rare and devastating genetic condition.

Further testing revealed that Stella’s mutation was “de novo”, meaning it occurred spontaneously—not inherited from either parent, but a random event during conception. We had never heard of CDKL5 before that moment, but it quickly became the defining word in our family’s vocabulary.

And just like that, Team Stella Strong was born.

Since that day, we’ve been on a mission:
→ Coordinating for a cure.
→ Fighting for her happiness.
→ Building a future where independence—even if just in small ways—is possible.

The “Gift” That Keeps On Giving

CDKL5 isn’t just one condition. It’s a full-body storm.

It brings with it:

• Drug-resistant seizures that strike frequently, unpredictably, and relentlessly.

• Global developmental delays, making even the smallest milestones monumental victories.

• Cortical visual impairment (CVI) that distorts the way Stella sees the world.

• Sleep disturbances that make rest a luxury.

• And more—from low tone and feeding challenges to sensory struggles and mobility issues.

It’s a diagnosis that doesn’t stop at a single symptom or system—it touches everything.

And yet… Stella continues to shine.

Every day, she shows us what strength looks like. Every small gain is a celebration. Every smile is a reminder that she’s not giving up—and neither are we.