15 Years of DSF

Good morning, everyone. My name is Arjun Pillai and I would like to talk about my own personal journey with SCN1A. I carry a change in my SCN1A gene, which is the cause of my epilepsy. My brother, Siddharth, carries the same change, but my epilepsy has been much milder over the years. And I […]

Our lives shattered on July 10th, 2023. That day, our perfectly healthy seven-month-old baby girl was rushed to the hospital for a complex seizure – one that was so difficult to control, doctors had to intubate her to get it to stop. What we hoped was a one time febrile seizure instead became a recurring

Kenidee’s Dravet syndrome story began when she was just five months old. What began as a family Christmas celebration turned into a hospital trip, which led to being admitted into our closest children’s hospital. During our family Christmas party, Kenidee went into a seizure that lasted over an hour. Thankfully, several members of our family

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

He Hit Us With a Love Bomb When Asher was born in January of 2003, we never expected just how much it would change our lives. We started seeing rhythmic jerking in his extremities by the end of February of that year and he had his first Generalized Tonic-Clonic seizure in April. Thus began the

Wyatt was born on May 23rd, 2019 with the brightest smile and the biggest blue eyes. He brought his parents the most joy and they truly felt their perfect little boy was going to change the world some day. Brave is what would describe Wyatt best from the very start. Never scared of anything he

I am a married father of a 12-year-old son Owen, and twin 9-year-old girls, Mimi and Piper, who were born on May 20, 2008. Piper was a healthy and happy baby until January 1, 2009, the day Piper had her first tonic-clonic seizure while vacationing on a small island in the Bahamas. It was a

Anna was born in September 2017 and diagnosed with Dravet syndrome in May 2018 after suffering from prolonged seizures. She has been to the hospital emergency room many times and experienced over 1200 seizures in her short life. Similar to other children living with DS, Anna faces significant challenges associated with her condition beyond the

Eden is full of love, compassion, and kindness. She is a green eyed, 9 year old sweetheart full of love, empathy, and sass. Eden is the most loving and caring person that you will ever meet and has a heart like no other. She sees the best in everyone and although she may not always

Breccan was born on October 2nd, 2014. He was a healthy, happy baby boy and developed normally for the first few years of his life.  Breccan had his first seizure in 2015 at only 4 months old. He developed a fever after his first round of shots and he began shaking on the left side