I became involved with the Dravet Syndrome Foundation (DSF) to find a sense of control where there was none. Being active and trying to be part of a solution became a driving force for me. Grace was diagnosed with Dravet syndrome (DS) a couple of months after her first birthday and I felt shock, sadness, and grief for the life I knew she would not have. Grace’s neurologist explained to me and my husband, this was the first time she had ever given this diagnosis to anyone. She did some research and found the DSF website, downloaded a pamphlet and handed it to me. That was the day our whole life changed.
Grace had her first seizure at 4 months old and by the time she was 10 months old, a 48-hour EEG at home resulted in the facts. Grace was having over 400 seizures a day. All types and at all times of the day and night. Before she turned one year old, she had been in the ER and pediatricians’ office so much that we were on a first-name basis with the office staff. She had been intubated 18 times and hospitalized almost weekly. We wanted answers, but no one could give us any and despite the obvious struggles this type of life brings, we could not find a doctor who would help us. Finally finding the right neurologist was the key to the inevitable answer and their help advocating for genetic testing with an insurance company that did not want to pay for it.
The next chapter of Grace’s life began with the entrance into her first clinical trial. Our family was nervous about the outcome, but we knew she could not keep living with the seizures she kept experiencing. This trial medication, which eventually received FDA approval, has helped for most of her life now as she continues to grow, and with seizures continually changing. Grace is now 11 years old and changing medications and treatments has been part of her life. Learning to live and adjust around these changes as she becomes a pre-teen with developmental delays and challenges with everyday activities is tough on all of us.
DSF has been welcoming and supportive of my family from the start with providing equipment to help Grace communicate, and emotional support with the programs they have for parents. I began volunteering with a small fundraiser to help raise money for DSF, then I was lucky enough to be a Family Network Ambassador for a little while and then I helped put together a Day of Dravet workshop for local families and two fundraising galas. Now, I get to work for DSF as their DEI (Diversity, Equity, & Inclusion) Coordinator where I can help elevate patient stories from all perspectives with a goal to expand the mission to provide support to affected individuals and families like my own.
Growing up with my grandparents, in a predominantly Hispanic community in Texas, I never heard any conversations about research trials or medication therapy. I grew up learning that hard work, getting an education and the importance of speaking English were the most valuable things I needed to know. I watched as the community I lived in struggled, but still managed to help each other out for everyday necessities. I learned that there is power in numbers and your neighbors would always be there for you. Now, I am expanding my neighborhood to the entire Dravet community, who teach me something new every day.
Bringing up Grace has been a struggle, but with the help of some great advocates along the way, a very supportive family team and DSF at my side, I know there is hope. Inviting everyone into that shared sense of belonging is what I really yearn for, since the best place to know you are looked after is in your family, especially when family is made of people you choose.
DEI is more than just recognizing holidays and cultural heritage on a calendar. It’s all about relationships, understanding and respecting each other! We all witnessed it first hand at the 2024 Biennial Conference. There was love and connection in the air with many newly diagnosed families meeting for the first time, greeting friends that were last seen at the previous conference, and in the sweet faces of all the Dravet children and adults that got to have fun together. We welcomed families from all over the world during those conference days.
Still, not all family stories are the same. The differences in our stories are what can make us all more united for the same cause – a cure for Dravet! By ensuring proactive inclusion, DSF can add more opportunities for representation across all genders, race and ethnicities, ages, sexual orientation or identities and education levels. This will introduce a new found sense of belonging and connectedness that will enhance DSF as a place that is, and has always been, respectful of all and identifies the value in every individual’s perspective.
No matter what, Grace comes first for me and our family. That means our family life and choices all revolve around her needs and these last 11 years have been a rollercoaster, for sure. I still try to be the best advocate for Grace I can be, and for the larger Dravet family I have been led to.
