It is truly an honor to run the TCS New York City Marathon for Team Dravet Syndrome!

In September 2023, my cousin Jordyn and her husband JP welcomed beautiful twin boys into the world. Less than a year later, after Mason and Colton experienced relentless seizures, genetic testing revealed SCN1A gene mutations, and they were officially diagnosed with Dravet syndrome. 

Having two children with this medically complex condition means double the seizures, the medications, the therapy appointments, the vigilance, and the emotional weight carried each day. Simple things like heat, overexcitement, or a minor illness can trigger a seizure without warning. Both boys require three medications, given twice a day, along with around-the-clock supervision for seizure and safety monitoring. 

Running a marathon is something you can train for. You follow a structured training plan with a clearly marked route and trust that there is a finish line at the end. Living with Dravet syndrome is anything but predictable. There is no set plan, no defined course, and no moment when the end is in sight. 

As a future physical therapist, I am inspired by kids like Mason and Colton as I watch them learn to move, adapt, and navigate a world that asks more of them than it ever should. I am deeply grateful for the opportunity to bring my passion for movement and my heart for the Dravet community together to raise critical funding, spread awareness, and help create hope for families affected by this cruel condition. 

Thank you for your generous donation and for being a part of our village. Your support reminds families like mine that they are not running this race alone.