Eliana: Dravet Syndrome Warrior

11/21/2025

Thank you for visiting us and the goodies!! We can’t wait to rock our new sunnies once you we break out these hospital walls!!
((And they are our favorite color💜))

10/31/2025

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🎃👻 Happy Halloween from all of us at DSF! 💜🕸️

We’re wishing every Dravet family a safe, joyful, and fun-filled Halloween! Whether your warrior dressed up, stayed cozy at home, or celebrated in their own special way — we’d love to see it.

📸 Share your favorite Halloween moments by Monday, November 3 to be featured in our Halloween roundup post and help us highlight the strength and spirit of the Dravet community.

Submit your photos here: https://bit.ly/3J6sDeB

10/28/2025

When you believe in miracles, they can come true ✨ 6 years of loving Eliana. She is the magic that brings our family together🌺 Ella es la vela, nuestra luz. Te amamos mucho.

10/23/2025

Me he (asociado) con Shine Forward With Dravet para hablar sobre el agotamiento de los cuidadores.
-En el momento en que a mi hija le diagnosticaron el síndrome de Dravet, mi mundo se hizo pedazos. Luché contra la depresión y la ansiedad, incluso, contra el trastorno de estrés postraumático (TEPT) por ver a mi bebé sufrir convulsiones y tener que usar respiradores. Sabía que no podía seguir a ese ritmo; ella no tenía ni un año y yo me ahogaba en lágrimas todos los días.
-No sucedió de la noche a la mañana, pero sabía que, eventualmente, necesitaría recibir ayuda para aprender a encontrarme a mí misma de nuevo. Más que su madre, su enfermera, su defensora, su cuidadora, ¡necesitaba ser YO!
-Comencé haciéndome pedicuras y llevando a Eliana conmigo. Luego, me animé a aceptar el apoyo familiar para poder tomarme un tiempo solo para mí: yo, una taza de café y mi técnica de uñas, disfrutando de algo simple y rutinario.
-Y con el tiempo, recibimos horas de enfermería y pude planificar un día espontáneo con sus hermanos mayores en Disney. (Si conoces el síndrome de Dravet, lo único espontáneo en la vida son las convulsiones y las visitas a urgencias).
-No importa que sea pequeño o grande, haz algo solo para TI. Recuerda, no se puede servir de un vaso vacío. Tómate un momento para sonreír y encontrar alegría. Aunque solo sea disfrutar de tu taza de café favorito durante unos minutos, cada momento importa 💜✨

10/12/2025

10/08/2025

Being a mom of a child with a rare disease means being questioned by those who are unfamiliar with Dravet syndrome and don’t know how important meds are. One missed dose can have life threatening consequences for Eliana.

I feel most confident in these situations when I’m prepared with letters from Eliana’s specialist explaining what is required when we travel anywhere with her medications, especially since some are ‘controlled substances’.

Living in Florida, her specialist helped us obtain a generator for Hurricane season. We also learned about the Emergency Order that can go in effect for early refills should a hurricane be headed our way.
· Take a moment to review the Emergency policies regarding medication refills in your state.
· Don’t be afraid to talk to your medical staff about how they can help you prepare for situations that may be upcoming. Medical care is a team effort💜

Thank you for sponsoring this post and helping us spread awareness.

10/06/2025

When you see this candle, it means that our Dravet Community has lost another sweet soul: 12yr old Molly💔

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/

10/05/2025

A principios de este año, asistimos al Día de Dravet con la en Sevierville, Tennessee. Participamos en , que fue un bosque recreado en el interior, lo que lo convirtió en una experiencia sensible a la temperatura y a los sentidos, ¡perfecta para nuestra niña!

Para nuestra familia, "acampar" ha sido una actividad descartada de nuestra lista de deseos debido a las extensas necesidades médicas de Eliana. El equipo de lo pasó de maravilla, alojándola por primera vez pescando, extrayendo carbón e incluso visitando un parque de diversiones.

Era un espacio con otras familias y voluntarios que conocían nuestra experiencia, estaban listos para ayudar en caso de una convulsión, y nos sentíamos como en familia. Al criar a tres hijos con una salud normal y luego añadir a nuestro hijo menor, con una salud frágil, a menudo es difícil superar el "ya no podemos con esto".

El mundo de las enfermedades raras es solitario, pero no tenemos por qué hacerlo solos. Rodéate de personas que te motiven, te enseñen y, sobre todo, que te comprendan. Como nuevo socio de , ¿cómo puedo ayudarte a sentirte incluido y visto? ¿Quiénes conforman tu sistema de apoyo?

09/29/2025

This weekend was full circle for my princess 😊 I’ve been going to for years. She did my baby shower nails and now the baby that was in my belly is getting her first ‘pedicure’ foot rub in the same place . They have always kept up with Eliana’s journey, supported me when I just can’t find my way in for an appointment, and just genuinely have become part of our extended family. Even my teenager got her nails done for the very first time a year or so ago with them 🥹 I appreciate and her entire team so much ✨

🩷💜🩷💜🩷💜🩷💜

09/19/2025

She did it!! My Nena had first Kindergarten day!! Does she go to a ‘school’? No she does not. Our medical team did not feel it was appropriate for her at this time. I cried A-LOT because we wouldn’t get that traditional meet the teacher experience, classroom experience, school shopping & 1st day at school photos. Sounds silly but it’s part of the process of watching your child grow up and I felt that Eliana’s rare disease was stealing yet another thing from us!! BUT after working with the county, school is coming to her!! I have to thank my support system because they are the ones who encouraged me to remember that HER experiences are just as special, if not more precious than those of the ‘normal’ child. I’m thankful for her nursing team who got balloons and made her the sign to celebrate HER achievement and 1st day of meeting her teacher 🥹🙏 What I learned & hope to share with you all? Stop imagining what the future SHOULD look like. Embrace what TODAY looks like because it’s just as beautiful 💜✨

09/13/2025

Congratulations to Eliana for completing her version of VPK, Early Intervention Program Lighthouse Central Florida! They specialize in “… helping guide children, living with blindness and vision loss, through all their developmental milestones in order to be confident, life-long learners.”
The sky is the limit mi vida- te amo💜

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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/