Thank you for taking the time to read this. I want to share the story of my daughter, Rilynn, a little girl who is truly one of a kind.

Rilynn is in 2nd grade, and she is the kind of child who lights up every room she walks into. She loves Taylor Swift, anything pink, and absolutely adores unicorns. She’s happiest when she’s with her family and friends, laughing, playing, and just being her sweet, joyful self. She has a gentle heart, a curious mind, and a smile that makes even the hardest days feel a little brighter.

Recently, our world changed when Rilynn was diagnosed with Batten disease, a rare and devastating neurological disorder. It slowly takes away abilities that children once had—like walking, seeing, and even communicating. Because her specific genetic mutation is extremely rare, there are no current treatments available that can help her right now.

But there is hope. Advances in CRISPR gene-editing therapy have opened the possibility of creating personalized treatments for children with ultra-rare mutations like Rilynn’s. This kind of therapy could potentially slow or even stop the progression of Batten disease—giving her the chance to keep being the amazing, vibrant little girl she is.

Unfortunately, because her mutation is so uncommon, it’s unlikely that a clinical trial will be available in time. That leaves us with one option:

Developing a custom CRISPR treatment made specifically for Rilynn.

The cost of creating this type of individualized therapy is overwhelming—over $2 million. But the possibility it offers is priceless: a real chance for Rilynn to keep living her life, loving her unicorns, singing Taylor Swift songs, and making memories with the people who adore her.

We are asking for support from anyone who feels moved to help. Whether through a donation or simply by sharing Rilynn’s story, your support truly makes a difference. Every contribution brings us closer to giving her a chance at the future she deserves.

Thank you, from the bottom of our hearts, for your time, your kindness, and your support. It means more than we can ever express.

With love and gratitude,

Stephanie and family