Fries Family

05.09.2023

In January 2018, we moved from Colorado to Boston for Mila to begin her treatment. Just before we left, two sisters living just an hour away were diagnosed with another form of Batten disease. Lilly was six then. She was running around, playing with friends, and singing her favorite songs. Today, Lilly is blind and spends most of her time on the floor. When she finishes eating, her mother holds her hands, wipes them clean and supports her daughter as she stands.

05.10.2023

When Cecilia was eight, she was diagnosed with Batten CLN3. So was her little sister Lilly. At the time, there were four promising treatments in the pipeline. There was hope. But despite the explosion of scientific advancements over the past few years, each of these treatments have been shelved or paused. Today, Cecilia has lost her vision, her mobility and her independence. Just a few last words remain. As she sits in her dark world, her father closes his eyes to join her, his hands in hers. He was never given the chance to try a treatment for his girls. And just like that, their hope was gone.

05.12.2023

“Cecilia and Lilly were typical kids until around seven, and then they started regressing. We got their diagnosis of Batten disease just after Zelie was born. She’s five now, but cognitively she’s already surpassed her oldest sisters. We try to let her just be a kid, but the reality is she will never know life without rare disease impacting her everyday.”

-Beth Fries