Hi, I’m Laura, a proud mom to Leah, and we’re raising awareness for Dravet Syndrome because of the profound impact it has had on our lives.

Leah is 9 years old and was diagnosed with Dravet Syndrome after a long journey of medical struggles, uncertainty, and unanswered questions. Her first seizure occurred when she was just 5 months old, it lasted 30 minutes on one side of her body. We were told it was a febrile seizure, but as a mother, my gut told me otherwise. Despite our repeated visits to the hospital, we couldn’t find the answers we desperately needed.

It wasn’t until we sought a second opinion at the Children's Hospital of Philadelphia that our story truly began to change. Her neurologist believed me and insisted on pushing for genetic testing. After much persistence, we were able to get the test, and it confirmed what we already feared: Leah has Dravet Syndrome, a rare and severe form of epilepsy.

This diagnosis has shaped not only Leah’s life but also our entire family’s. Leah has faced countless challenges, from seizures, speech difficulties, limited food intake, and difficulties with medication management, but she continues to amaze us with her resilience. Today, she’s an energetic, joyful, and loving child who thrives in school, participated in competitive cheer and currently does tumbling. She also enjoys singing and staying active with her peers.

While Leah’s seizure activity has improved significantly, she still experiences seizures when she’s sick or overheated, and feeding has become a major challenge. This year, Leah had an NG tube placed to help with her nutrition—a decision that wasn’t easy but was the right one. It was a tough moment for us as parents, but it was empowering to make that call and provide her with the support she needed. She now has increased energy and is getting the nutrition she needs!

Advocacy and education are strong passions of mine that I have focused on intensely while pursuing my Doctorate in Occupational Therapy. Raising awareness about Dravet Syndrome is essential, not just for families like ours, but also to help research progress and support the Dravet community. We’ve lived through the isolation and challenges of this diagnosis, and we are passionate about raising our voices to ensure that others don’t feel alone in their journey.

As a Doctor of Occupational Therapy, I’m also focused on using my clinical knowledge to advocate for families impacted by rare diseases. My capstone project focused on mental health advocacy and underrepresented populations, and it’s given me the tools to approach Dravet Syndrome with a mindset of occupational justice—ensuring that families have access to the resources they need to live meaningful, fulfilling lives.

We’ve lived by the motto #NotTodayDravet throughout this journey. It’s more than just a hashtag—it’s our way of fighting back, staying hopeful, and living a joyful life despite the challenges Dravet Syndrome presents. We’re determined to raise awareness, support research, and provide hope to families facing the same struggles we’ve faced.

We’re raising funds for the Dravet Syndrome Foundation to support research, education, and advocacy that can help families like ours. Every dollar helps move us closer to a future with better treatment, more support for families, and ultimately a cure.

Thank you for your support as we continue to share our journey and raise awareness for Dravet Syndrome. Together, we can make a difference. ?