Eliana: Dravet Syndrome Warrior

08/09/2025

When you see this candle, it means that our Dravet Community has lost another sweet soul: 4yr old Rory 💔

Sending prayers and our condolences to the family as they face every parents worst nightmare ….

Learn how to support a grieving family or access our DSF Bereavement Support here:
https://dravetfoundation.org/caregiver-resources/bereavement/

08/06/2025

Mark your calendars 💜

Just one week away! DSF’s virtual Town Hall is happening August 12 at 7PM ET, and it’s your chance to hear directly from our team about recent progress in research, support initiatives, and what's coming next.

Whether you're new to the community or have been with us from the start, we hope you’ll join us for this important community update.

🔗 Register today: https://bit.ly/4klXBvA

07/16/2025

💜 ¡No es tu culpa, y eso te hace más fuerte! 🌟 Mamás y papás, grabad esto en vuestro corazón: el síndrome de de vuestros hijos no es vuestra responsabilidad. Liberad la tristeza, respirad profundo y abracemos este desafío con todo el amor y fuerza que llevamos dentro. 💪

✨ No elegimos este camino, pero sí cómo recorrerlo. Cada día es una nueva oportunidad para crecer y brillar con esperanza. ¡Juntos, somos imparables! 🚀

🤗 Sois héroes para vuestros . ¡Y nuestra Fundación está con vosotros! 🌈

💫 ¡Únete a nuestra comunidad! Apoya y encuentra fuerza y esperanza en nuestra unión. 🙌

06/24/2025

It's June 23- Dravet Awareness Day! 💜

✨On this special day Eliana lost her very 1st tooth! I can only say that today is extra special because there were nights we cried in bed hoping our princess would make it to meet a milestone this special ✨

Dravet Syndrome has been so hard on Eliana’s body, we have watched our community loose so many children, but never does she ever give up!! She’s my hero and I’m so honored to share her story & spread awareness.

💜Ask about Dravet syndrome, Dravet Syndrome Foundation, Eliana... Anything! Dravet is more than just seizures and impacts the whole family. It's our mission to spread awareness and educate others! So... ASK ME ANYTHING! 💜

06/21/2025

TELL US ABOUT YOUR DRAVET WARRIOR 💜 Whether they’re fearless, joyful, determined, or all of the above — help us tell the stories that inspire our community every day.

🦋 Edit the “My Warrior Is…” template from the Dravet Syndrome Foundation Awareness Toolkit and share yours today: https://bit.ly/3FC4QRQ

06/09/2025

El síndrome de Dravet es una forma rara y catastrófica de epilepsia✨ Afecta aproximadamente a 1 de cada 15,700 nacidos vivos en Estados Unidos y requiere atención y apoyo. Dravet Syndrome Foundation desempeña un papel fundamental impulsando la investigación, apoyando a las familias y creando conciencia para mejorar la vida de las personas afectadas y brindar esperanza para el futuro. Todo niño merece la oportunidad de una vida plena y feliz 💜

06/08/2025

Please consider joining for such a amazing ✨
The strongest families I’ve ever met will be there 🙏🏼

Each year, Dravet Remembrance Day is a time to pause and honor those in our community that have left us too soon.

We invite you to join us on June 15 at 12pm ET / 11am CT / 10am MT / 9am PT as we share a video tribute remembering those we've lost and the impact they continue to have.

06/08/2025

Dravet syndrome is a rare, catastrophic form of epilepsy✨

Affecting approximately 1 in 15,700 live births in the U.S., Dravet syndrome requires comprehensive care and support. The Dravet Syndrome Foundation plays a vital role in driving research, supporting families, and raising awareness to improve the lives of those affected and bring hope for the future.

Every child deserves a chance at a full and happy life 💜

06/08/2025

When you see this candle it means that one of our Dravet warriors has gained their wings💜

Sarah has gained her wings. Please pray for her family as they deal with such an awful loss. Sending all our love and healing prayers 🙏🏼✨

To learn more about Dravet and donate toward a cure visit www.dravetfoundation.org

Learn how to support a grieving family or access our DSF Bereavement Support here:
https://dravetfoundation.org/caregiver-resources/bereavement/

05/13/2025

🥺💜✨

We celebrate the life of Dr. Charlotte Dravet, who passed away this past weekend. She leaves behind a remarkable legacy in epilepsy research. Her pioneering work in identifying Dravet syndrome brought vital awareness and understanding to a rare and devastating condition. We honor her contributions and extend our heartfelt condolences to her family and all those touched by her life’s work. 💜

04/02/2025

When you see this candle it means that one of our Dravet warriors has gained their wings💜

Sweet Matilda at only 4 years old has gained her wings. Please pray for this baby girls family as they deal with such an awful loss. Sending all our love and healing prayers 🙏🏼✨

To learn more about Dravet and donate toward a cure visit www.dravetfoundation.org

Learn how to support a grieving family or access our DSF Bereavement Support here:
https://dravetfoundation.org/caregiver-resources/bereavement/

03/31/2025

Thank you Z88.3, Orlando FL and AdventHealth for Children for gifting us tickets to the Orlando Family Stage play🥰

Amazing show, music, and cast! The theatre was the perfect size to avoid sensory overload for Eliana, low lighting but the perfect amount of music to keep her engaged! We were surprised with a meet and greet with the cast and big brother got to hold the the one of a kind Diary‼️

Such a blessing to be able to provide Eliana, our girl fighting a rare disease daily, such a special experience like this !!