Sienna was born to be a star. From the minute she entered this world she has captivated everyone around her. Her personality is infectious, and she is a force to be reckoned with. She is fiercely independent, while still being the biggest lover girl around. Her smile and laughter fill the room with joy, and she is truly such a blessing.

On January 24, 2022, shortly after turning 8 months old, Sienna had her first seizure as she was sitting in her Papa’s lap. At the time, we didn’t quite know what was wrong since it was a short episode. We went to the ER just to check her out and the words of the doctor will forever haunt us – “it was most likely a febrile seizure. You get the first for free, there is nothing to worry about”. If we could only tell that doctor how horribly wrong he was and that our lives would be forever changed.

The next day, Sienna had a status tonic clonic seizure lasting over 30 minutes. During that hospitalization in the Pediatric ICU she had the full work up – EEG, MRI and blood work to determine what was going on. After an abnormal EEG, the neurologist recommended we do genetic testing. We thought we were doing this test to check another box, that life would go back to normal and that nothing was seriously wrong with our perfect little girl.

A few months after completing the genetic testing we got the results back – Sienna had a mutation of her SCN1A gene. Our minds whirled and twirled as we frantically searched for what that meant. At our next meeting with our neurologist, she explained that mutation is a spectrum and that she didn’t believe Sienna had Dravet syndrome. We had done additional research and knew we wanted a second opinion from Dr. Sullivan, a neurologist that specializes in Dravet syndrome at UCSF.

The day we met Dr. Sullivan was one of the best and worst days of our lives. We are truly blessed to have him as Sienna’s neurologist now but on that initial call he determined that Sienna had a 95% chance of having Dravet syndrome. Just a month after that call, Sienna would have another status seizure lasting nearly 45 minutes where she would find herself intubated and back in the PICU.

Since January 24, 2022, Sienna has had 19 status seizures needing multiple rounds of rescue medication. She has been in the PICU, intubated and put in a medically induced coma multiple times and has had more blood work done than most adults in their lives. As of recently, she started having absence seizures which could range from a few to dozens a day.

She is currently on 3 anti-seizure medications twice a day. She is in speech, occupational and physical therapy and is about a year behind where she should be developmentally.

Dravet affects every aspect of our lives. There is not a second of the day when Sienna is not being supervised; even at night when she has 2 seizure devices monitoring her during sleep. People with Dravet syndrome are 10 times more susceptible to Sudden Unexplained Death in Epilepsy (SUDEP) than those with less severe types of epilepsy. It is our greatest fear and something we hope we never experience. Anywhere she goes, her rescue medication is within reach as we never know when and where her next seizure will strike.

Through it all, we try to live as normal of a life as possible. In August 2023, she started at a neurotypical preschool three days per week which has been wonderful for her development.

We are forever grateful for The Dravet Syndrome Foundation for providing an outlet to connect with other families, resources and above all continuing to advocate and raise funds to find a cure.

Sienna is a warrior and a fighter. She doesn’t deserve the cards that have been dealt to her, but she handles it with tenacity and grace. Through it all, she gives us strength and hope when it feels like our tanks are empty.

With the continued support, fundraising and advocacy we are hopeful we will see a cure in her lifetime.