Every Family Touched by Batten Disease Carries a Story.

Our story begins long before we ever knew the word “Batten.”

We were a normal family — school, sports, vacations, family gatherings, camping trips, card games, and laughter that filled every room. The boys grew up surrounded by love, routine, and each other.

At the center of our story are two brothers: Jordan and Zachary.

Jordan, the older of the two boys, was brilliant from the start. He skipped kindergarten, earned straight A’s, and loved anything that challenged his mind. He enjoyed playing cards with Memere, watching sports (especially the Patriots), playing soccer, and being part of school life. He connected easily with people and carried a warmth that made everyone feel comfortable around him.

Zachary, the youngest, was pure joy and personality. He loved movies — watching them when he could see, and later listening to them when he couldn’t. He loved music, especially the songs that made him smile. He was hilarious, loved jokes, and had a laugh that filled the whole house. He adored dogs, gave the best shoulder massages, and loved being surrounded by family. He hugged with his whole heart and had a way of making everyone feel loved.

Life was full.
Life was normal.
Life was theirs.

Zachary’s symptoms began at age seven. Jordan’s began one year later, at age twelve. Because they were four years apart in age, their symptoms appeared one year apart, but their losses unfolded five years apart — a strange, painful pattern that shaped the next two decades.

In those early years, the boys were still able to do so much. Jordan still played sports, still counted everything, still loved being part of the world around him. Zachary still sang, still hugged, still played, still found joy in the routines he loved. We didn’t know what was coming. We only knew to keep going.

As the disease progressed, the boys began losing abilities — sight, mobility, speech, independence — each loss arriving five years apart, as if the disease was following a script none of us asked for. Jordan slowly lost the things he once excelled at — reading, math, schoolwork, sports, speech. Zachary lost them earlier, and watching Jordan follow that same path was a heartbreak we can’t put into words.

But even as abilities faded, their love never did.

Jordan still reacts. He still feels. He still connects. He still knows his people. He receives the care he needs, and he remains deeply loved and deeply present.

Zachary lived with joy even as the disease progressed. He found comfort in family, in music, in touch, in routine, and in the people who loved him. He left love notes, hugs, and memories that feel like treasures now. His presence shaped every part of our family’s story, and we carry him with us in everything we do.

Today, Jordan continues to be a source of connection, emotion, and love. He communicates in the ways he can — through reactions, sounds, expressions, and presence. He is still here, still ours, still part of everything we do.

Zachary is no longer with us, but he remains everywhere — in our memories, in our stories, in our mission, and in the love that built this nonprofit.

Brothers With Batten’s grew out of years of lived experience, love, and a deep understanding of what families facing Batten Disease truly need. This nonprofit was created by siblings — biological and step‑siblings — who walked this road together. It was built by a family who knows what Batten takes, and what it can never touch.

We created Brothers With Batten’s to honor Jordan, remember Zachary, support families walking this same road, uplift siblings who often feel invisible, build community, share understanding, offer connection, and remind families they are not alone.

Our story is personal, but our mission is universal.

We can’t change the road we were given — but we can make sure no one walks it alone.