Here’s to baseball, hustlers and believing
By Jennifer Sills, president & founder, CSNK2A1 Foundation, and contributor to The Disorder Channel
Netflix’s The Saint of Second Chances may be labelled as a baseball documentary, but it’s so much more than that. It’s a story of redemption, reinvention and relationships, centered on Bill and Mike Veeck—the father-son duo whose unorthodox marketing ideas forever changed the game. From Bill’s visionary creation of fan-friendly ballparks to Mike’s infamous “Disco Demolition Night”, the Veecks built a legacy of bold, sometimes outrageous, risk-taking that transformed the baseball-watching experience.
The film is about more than baseball, it’s also a story about rare disease and a story about life. The narrator sets the tone at the start of the film: “This is a story of baseball hustlers. A story of fathers and their sons. And fathers and their daughters. The complicated, messy stuff.” That line landed heavily for me because, as a rare disease parent, I live in the complicated, messy stuff every day.
Midway through the documentary, Mike’s world is turned upside down when his daughter Rebecca, the light of his life, starts experiencing troubling symptoms. Initially diagnosed with retinitis pigmentosa, which causes progressive blindness, Rebecca is later found (11 years later) to have Batten disease, a rare and fatal neurodegenerative disorder. Watching Mike’s response to his daughter’s diagnosis felt both painfully familiar and profoundly relatable.
Beyond the shock of the initial diagnosis, Mike does something so many rare disease parents do: he tries to control the uncontrollable. In his all-in, larger-than-life way, he sets out to ensure Rebecca sees as much of the world as possible before losing her vision. Together, they embark on a whirlwind five-month, 40-city, five-country adventure. His joy and determination to make every moment count are heartwarming and gut-wrenching all at once—something every rare disease parent can understand.
But even in the midst of this extraordinary journey, Rebecca grounds Mike with her wisdom. She gently reminds him that she needs to return to school, to her life. This struck such a chord with me: the delicate balance of making memories while preserving a sense of normalcy. Chasing joy doesn’t mean running from reality, it means threading the extraordinary into the everyday.
One particularly poignant moment in the film is when Mike attempts to understand Rebecca’s daily life. He closes his eyes and tries to navigate a baseball stadium for just five minutes. It’s overwhelming and he’s in awe of her resilience. As a parent of a nonverbal child, this moment hit home for me. I often think about how frustrating it must be for my daughter, Jules, not to be able to express herself fully. I’ve tried going without speaking for short periods to gain perspective and even those brief moments are impossibly difficult. Mike’s gesture was a powerful reminder of the lengths we go to in trying to empathise with our children’s experiences, even when we know we can never truly understand.
Mike’s heartbreak is palpable when he reflects on what he imagined Rebecca’s life would be. “She was absolutely going to be the heir apparent. She was going to run a minor league team somewhere.” That line pierced me. I, too, dream of what could have been for my Jules—of unlocking the potential I know is there. The rare disease journey is as much about fighting for progress as it is about grieving for what might have been.
For a baseball film, The Saint of Second Chances touches on themes central to the rare disease community. One of the most profound is the timing of a diagnosis: would you want to know as early as possible or would you prefer to remain in the dark? The Veecks didn’t receive Rebecca’s Batten disease diagnosis until 11 years after her first misdiagnosis. Her mother candidly shares that she was grateful for those years of not knowing. “And truly, it was only an act of God that she was misdiagnosed,” she explains. “Because had we known for that 11-year period, we never would have survived it.”
As a rare disease parent I’m a strong advocate for early diagnosis. It can connect families with a community and open doors to treatments or clinical trials. But hearing Rebecca’s mom’s perspective reminded me of the complexity of this issue. Timing shapes not only our medical journeys but also our emotional ones, and no two paths are the same.
I see a lot of Mike Veeck in our rare disease community leaders. The rare disease community is full of trailblazers, and in this way, Mike Veeck’s philosophy echoes ours. He calls them “hustlers.” “A hustler is not a con man,” he says. “The hustler believes…we’re all hustlers. We believe.” I see this same spirit in parents like Pat Furlong, John Crowley and Matt Wilsey who’ve revolutionised rare disease advocacy. They’ve taken bold risks, challenged the status quo and forged paths that allow others, like me, to follow.
Baseball, at its core, is about risk and reward. So is rare disease advocacy. Whether it’s a game-changing marketing gimmick or a life-saving medical breakthrough, progress comes from those who bet on the improbable and dare to believe.
The Saint of Second Chances reminded me of the beauty in life’s messiness. It’s a celebration of resilience, love and the bold act of believing against all odds. Do yourself a favour—watch this film. It’s packed with moments that will leave you smiling and inspired. Plus, it is also an amazing baseball documentary!
Here’s to the messy and complicated. Here’s to baseball, hustlers and believing.
One Shot to Live: Hope + Science
Batten disease is also central to a powerful short documentary on The Disorder Channel. The documentary One Shot to Live is not just a film—it’s a testament to the bold act of believing against all odds. Progress in the rare disease world comes from those who bet on the improbable and dare to hope. This film takes viewers deep into the lives of two families navigating the impossible landscape of rare diseases, sharing their heartbreak, frustration and resilience. It also offers a glimpse of hope through the transformative potential of gene therapy. As the mother of a child with Okur-Chung neurodevelopmental syndrome (OCNDS), the themes in this film resonate with my own family’s rare disease journey and serve as a rallying cry for our community.
The film follows two families: the Wolebens and the Hanns. Both face devastating rare disease diagnoses for their sons—Surf1 Leigh syndrome for William Woleben and an extraordinarily rare form of Batten disease for Joseph Hann. Both families, however, find hope in the groundbreaking gene therapy work of Dr Steven Gray at UT Southwestern Medical Center.
The story begins with a joy that so many of us know: the birth of a baby. I know this story well. Parents count ten fingers and ten toes and breathe a sigh of relief, thinking, ‘I have a healthy baby, anything is possible’. But life doesn’t always go as planned. Watching those tender early moments in the film—William as a baby, a toddler cuddling with his golden retriever—my chest tightened and my eyes filled with tears. I knew where the story was heading and my heart broke for the Wolebens and the future they thought they would have.
The Woleben family’s world turned upside down when their oldest son, William, was diagnosed with Surf1 Leigh syndrome, a fatal rare disease. The words from the doctors were devastating: “Take your son home and enjoy him”. Hearing his parents describe the first six months after the diagnosis brought me back to my own darkest days. The helplessness, the anger, the unrelenting grief—these emotions are universal in the rare disease community. Yet the film doesn’t leave us in despair.
What sets One Shot to Live apart is its focus on hope and living fully in the present. William, a boy who loves hockey, continues to smile and find joy despite his immense challenges. His mother’s reflection—“What a miracle being alive is. You realise not to sweat the small stuff”—is a powerful reminder that even in the hardest moments, there is so much to cherish.
The Hann family’s story is equally compelling. When Joseph was diagnosed with a rare form of Batten disease his parents were told to prepare for the worst. But rather than succumb to hopelessness, they uprooted their lives changing jobs and moving states to participate in a clinical trial at UT Southwestern Medical Center. Their determination is nothing short of heroic, proving that hope isn’t passive—it’s an active pursuit, taken one step at a time.
In this modern age heroes don’t wear capes, they wear lab coats. And the hero of this story is Dr Steven Gray. Dr Gray’s pioneering work in gene therapy is a beacon of hope, not only for the Wolebens and Hanns, but for families like mine. The film presents the science of gene therapy in a way that is accessible and inspiring, showing its potential to change lives. For those of us advocating for life-changing research, this reaffirms why we fight so hard every day.
Matt Hann offers a profound metaphor for life with a rare disease and how he can mentally manage his son’s devastating diagnosis: he says the mental strength required is akin to walking a tightrope across the Grand Canyon. One step at a time never looking down—because if you pause to process the enormity of it all, you might fall. It is such a powerful visual. I can imagine rare parents militantly marching through their day, determined, with the mantra “left foot, right foot, left foot, repeat!” It’s a powerful reminder of the delicate balance between surviving the daily challenges and holding on to hope for the future.
The film concludes with two powerful messages. The first is from William’s mother: “Without hope, there is nothing.” I would add: “Without hope and science, there is nothing.” The second comes from Joseph’s mother: “Joseph may not be treated. Our hope is that we can change the outcome, if not for him, then for someone else. Our life is not going to start when we get the therapy. It would be a mistake not to look at today as the best day.”
That sentiment resonates deeply and provokes the same feeling as The Saint of Second Chances, “Chasing joy doesn’t mean running from reality; it means threading the extraordinary into the everyday.” Effie Parks, a fellow rare disease advocate, often highlights this truth: glimmers of hope and joy are always there if you’re willing to see them. Grab those moments with both hands, as many as you can hold. Don’t wait for tomorrow to find joy—it’s here, right now.
One Shot to Live packs so much into just 23 minutes. You have 23 minutes—watch this film on The Disorder Channel and then share it with your friends, family and providers! Let it remind you to chase joy and see the miracles already in front of you. And let it inspire you to support the kind of life-changing research that transforms hope into reality. Here’s to hope + science!
Jennifer Sills is the founder and president of the CSNK2A1 Foundation, dedicated to supporting families affected by Okur-Chung neurodevelopmental syndrome (OCNDS) and advancing research toward treatments and cures. A passionate advocate and mother of a child with OCNDS, Jennifer brings a unique and personal perspective to her work. She is featured in, and conducted interviews for, two impactful films on the Disorder Channel, raising awareness for the rare disease community.
