The Fröschl Family

Meet Theo

Theo is four years old, and his parents describe him simply as a super fun little guy. Always in a good mood. Always laughing. He has a way of making everyone around him laugh too. He is deeply drawn to water in every form... a bucket, a lake, a pool... and will happily keep busy with nothing more than that. He doesn't quite grasp that he can't breathe underwater, which keeps his parents close and watchful, but it speaks to a joy that runs right through him. Theo is still nonverbal, but he has his own language. Touch is at the centre of how he connects with the world. He is always seeking body contact, always wanting to be held, cuddled. Even now, as a growing young boy, he still loves to be carried. It's how he tells his family what's on his mind, even when they can't always follow exactly what he means. Theo is also a wonderful big brother. His little brother Freddy, just over a year old, is already a whirlwind... walking confidently, climbing everything. And in watching Freddy race ahead, something has shifted in Theo too. He's found a new kind of motivation, a reason to keep reaching for his own next step. The two of them have grown closer by the day. What once looked like mild annoyance from Freddy has turned into something sweeter. Now they can be found cuddling, reaching for each other, two little partners in crime with the family dog close behind.

Their Story

The early signs were subtle. At three months, an osteopath raised a concern that felt random and unsettling. By ten months, their pediatrician noted that Theo's development was behind. As first-time parents, Janis and Annika didn't yet know what milestones to expect or worry over, and were told, as so many parents are, that some children simply take a little longer. It wasn't until genetic testing, when Theo was almost a year and a half old, that they finally were told it was KCNH1. Their own doctor had never heard of it. The hospital didn't know what it was. It was a shock they hadn't prepared for. They had braced themselves for the possibility of challenges, but not for this.

Finding Their People

In the days after diagnosis, the family quietly set up a monthly donation to the Cure KCNH1 Foundation. They did not expect a response; they were simply moved that an organization existed for a cause so close to their own. Within the week, Michaelle reached out to ask what prompted the donation commitment. That small, curious question became the beginning of their connection to the community. It took time for the Froeschl family to feel ready to step further into the community. That's not unusual... taking in someone else's journey, on top of your own, can be its own kind of heavy. But slowly, they found families further down the road, asking questions, sharing what worked and what didn't, and the isolation of such a rare diagnosis began to soften into something else entirely... a far-flung, deeply felt family.

A Connection That Made All the Difference

In what Janis and Annika describe as a bit of good fortune, their family played a quiet but meaningful role in connecting the KCNH1 community with two doctors who have since become invaluable to the Foundation's research. After learning about Cure KCNH1, they shared the Foundation's information with their attending physician, encouraging a connection. That simple introduction led to Dr. Malin Zaddach and Dr. Leonie Nicolai becoming closely involved with the registry, the KCNH1 research, and the wider community... a connection Michaelle has called pivotal for the entire KCNH1 community. Janis and Annika are quick to downplay their part in it, calling it more luck than intention. But it's exactly the kind of quiet advocacy that ripples outward in ways a family doesn't always get to see... a shared website, a hopeful suggestion, and now two wonderful doctors woven into the fabric of this community's research.

A Day in Their Life

Janis and Annika both work from home, which gives them more time with their boys than a typical workday would allow. Theo's week is full: physiotherapy, speech therapy, occupational therapy, all woven into his days at kindergarten alongside therapists he has come to love. The afternoons belong to the boys... walks with the dog, time at the lake or the pool the family shares with their small community of neighbours, and dinner that doesn't always happen on anyone's clock but Theo and Freddy's. Their beloved babysitter gives them a few hours most Saturdays to simply be Janis and Annika again, if only for an evening.

"It's so hard to have a child with this super rare disease, which nobody can relate to in such a distinct way... and now we have this international family."

Progress, One Win at a Time

For the Fröschl family, progress shows up in the quiet absence of hard things. Fewer seizures. A stretch of months without illness. Nights where Theo sleeps through instead of waking for hours. A new medication that has given him calmer, deeper rest. And then there's the hope just ahead... steadier steps with his walker, getting stronger by the day. The dream, someday, of him pointing to what he wants. Small steps, slowly working his way forward.

Their Village

Family and close friends have been an unwavering constant. Janis and Annika describe never once having a bad experience. They are surrounded by people who showed up, stayed close, and made space for Theo exactly as he is. For their friends' children, who have grown up alongside Theo and his walker, there has never been a question of difference. It has simply always been normal.

Hopes for the Future

More than anything, Janis and Annika hope for Theo to one day move through the world with a little more independence. They speak of new research and emerging treatments with real hope, holding onto the possibility of what they could mean for Theo's future. Whatever shape that future takes, they hold onto something simple. Their kids haven't given them the life they imagined... they've given them a better one.