Stella’s Story Is Reaching Hearts Everywhere
From research foundations to news outlets, podcasts, and community spotlights — Stella’s journey has touched countless lives. Each story shared helps raise awareness, inspire giving, and build a brighter future for all children with CDKL5 Deficiency Disorder.
We’re incredibly grateful for every organization, journalist, and community that has taken the time to share Stella’s story. Every interview, article, or feature helps others learn about CDKL5, understand the realities of rare disease families, and join us in the mission to fund research and care.
This page is a collection of those moments — reminders that even the smallest stories can spark big change.
Little Eyes, Big Topics — AAPOS Podcast
Episode: “Understanding CVI Through Stella’s Story”
Aired July 11, 2025
In this episode of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) podcast, Little Eyes, Big Topics, Jessica shares Stella’s journey with Cortical Visual Impairment (CVI) — one of the most common causes of visual impairment in children with neurological differences.
Through their conversation, Jessica and the hosts discuss what it’s like navigating CVI from both a medical and a parent perspective: how Stella experiences the world, how her care team adapts therapies to her unique visual needs, and why early understanding of CVI is so critical for children with CDKL5 and similar conditions.
Listen to the episode here → AAPOS Podcast: Little Eyes, Big Topics – “Understanding CVI Through Stella’s Story”
Care & Cure Institute — 2023 Feature
November 1, 2023
Stella was the featured story when the Care & Cure Institute honored her neurologist, Dr. Rajsekar “Raj” Rajaraman, for his leadership and dedication to children with complex neurological disorders. The Institute is a nonprofit working to improve the lives of kids with epilepsy by funding specialist training, expanding access to care, and advancing research toward a cure.
Watch now → 2023 Care & Cure Institute Featured Video
AllStripes — “A Day in the Life with Stella”
October 8, 2021
AllStripes spotlighted Stella’s day in a unique way — posting new videos every 30 minutes on their Instagram feed to give followers a behind-the-scenes look at her life, therapies, and triumphs. This real-time feature helped friends and strangers alike connect with her story and better understand what life with CDKL5 looks like.
What is AllStripes?
AllStripes is a healthcare technology platform dedicated to rare diseases. It empowers patients and families to securely contribute their medical data, fueling research and accelerating treatment development. In 2023, AllStripes was acquired by PicnicHealth, further expanding its mission to advance patient-centered rare disease research through data-driven collaboration.
Watch now → Instagram Takeover: A Day in the Life of Stella