What a week it’s been…
From Las Vegas to Arkansas, our journey has been filled with purpose, passion, and a whole lot of love.
We spent Wednesday through Sunday in Vegas for the Parent Project Muscular Dystrophy conference. I had the incredible opportunity to speak to newly diagnosed families, sharing our story and reminding them that even in the hardest moments, hope is still alive. I sat on a panel, and walked away with new friendships, renewed strength, and a heart full of gratitude. Connecting with brilliant doctors, compassionate support staff, innovative researchers, and families just like ours—it was nothing short of inspiring.
But the week didn’t end there. One conversation led to a last-minute appointment at Arkansas Children’s, so off we went – an 8-hour drive with our boys in tow. They were thrilled at first, shouting “Road trip!”… until about an hour in: “Are we there yet?”
Today was a full day of appointments, and now we’re making the long drive back home. We might stop halfway, who knows?
This is our life. It’s messy, beautiful, exhausting, and extraordinary. Its road trips, hospital visits, advocacy, late-night packing, early mornings, and pouring our hearts into a fight we never chose but one we will never back down from. This is us. And I wouldn’t trade it for anything in the world.
To our friends, family, and our PPMD tribe: you are our lifeline.
To my boys: you are my reason, my joy, my strength.
To Duchenne: Not Today. We are stronger than you.
