NARS1 Family & Researcher Gathering

Sometimes there are people. Sometimes there is community. Sometimes you find your tribe. And then, every once in a while, you find a rare kind of family you didn’t even know you needed.

This past weekend, we had the incredible gift of meeting some of Marley’s genetic siblings—other children and families living with NARS1, just like Marley.

There is something almost impossible to describe about being in a space where you don’t have to explain or apologize. A place where everyone just gets it. Where you can share stories and feel instantly understood. Where you look across the room and see another child with the exact same mannerisms as yours and it takes your breath away.

For once, the very things that make our kids rare were the very things connecting us.

What a beautiful, sweet weekend it was.

We spent time with researchers working tirelessly toward a better future for our NARS1 kids, a foundation that is still young but already so mighty, and parents who carry the same hopes, fears, and dreams that we do.

I am so thankful for every person who was there. And so thankful we were able to go—because more than I realized, it was exactly what my heart needed.

It was also incredibly special to have my sister with us. Aunt Krissy has always been one of Marley’s biggest advocates, and I know she always will be. Sharing this experience with her meant more than I can say.

When I started Marley’s account, it was never to show every part of her life—it was to be a source of hope.

My prayer is that as more NARS1 families find us, we can continue pointing them toward connection, toward support, and toward a community that understands. That we can show them that while life is not perfect, these children have such a beautiful and important place in this world. They are worthy of being known, celebrated, included, and loved exactly as they are—and they are teaching us so much.

I believe a day is coming when there will be therapeutics.

A day when we will see the changes we’ve prayed for.

A day of greater acceptance, inclusion, understanding, and awareness of NARS1.

Until that day comes, we will keep hoping. We will keep advocating. We will keep sharing. We will keep finding one another.

Marley may be one of only around 50 people in the world known to have her specific variant, but after this weekend, one thing is certain:

We are rare, but we are not alone. 🤍

What a gift it is to find family in the rarest of places. 🧬🤍