Kayaking for Hope: A Family’s Fight Against Pediatric Cancer

The Day Everything Changed

In October 2015, life as the Ortiz family knew it came to a shattering halt with three stark words: “Sebastian has cancer.” Sebastian was a truly wonderful human being who had an amazing ability to connect with people of all ages and backgrounds. He was observant, charming, strong, and caring, always keeping spirits up despite his struggles, and showed incredible courage throughout his battle with cancer. The diagnosis of rhabdomyosarcoma, a rare and aggressive form of childhood cancer, thrust Oscar, Rose, and their three sons into an unforeseen battle marked by cycles of hope and despair. As they navigated a labyrinth of medical treatments—dozens of chemotherapy sessions, relentless radiation, and multiple surgeries—the harsh reality set in: the available treatments were incredibly punishing, with little innovation in decades. 

A Loss Beyond Words 

There are names for those who endure the loss of parents or a spouse: orphans or widows. But for those who lose a child, there is no name—only a silence too profound to capture in words. For Oscar and Rose Ortiz, this silence becomes a story of immeasurable grief transforming into a quest for hope and change. 

A Harsh Reminder of Treatment’s Toxicity 

The incident in the hospital is just one of many moments during their journey that vividly illustrated the brutal reality they were living through—fighting cancer with tools as harmful as the disease itself, caught in a painful paradox that often left them feeling powerless. “The treatments stole much more than Sebastian’s hair; they took his laughter, his energy, and his time,” Oscar recalls, the pain evident in his voice. “No matter how much money we had or where in the world we would have gone, Sebastian’s only treatment option was over 40 years old, highly toxic, and ultimately ineffective.” As the months wore on, the treatments that promised so much delivered so little, and the Ortiz family was faced with the harrowing truth that their options were dwindling rapidly. 

The Painful Reality and the Foundation’s Response

“We did not know what we know now about pediatric cancer. We didn’t know that the options were so limited. We didn’t realize that they were as toxic as they are. Unless you’ve lived this or someone educates you about it, you assume that the pediatric cancer world is keeping up with the adult cancer world, and it really isn’t,” Rose Ortiz shared, reflecting on the painful journey that shed light on the stark realities of pediatric cancer treatment. 

Since its inception in 2017, the SebastianStrong Foundation has championed change in pediatric cancer research. Driven by the mission of finding better treatment options, the foundation has raised awareness about the need for innovative and less toxic treatments and mobilized substantial resources to support this cause. To date, SebastianStrong has committed over $4 million to childhood cancer research, leveraging strategic funding to increase its impact to $6 million. The selection process, led by top pediatric oncologists and researchers, involves rigorous evaluation using a proprietary scoring matrix. This ensures that only the most promising projects advance, receiving comprehensive feedback and further scrutiny in collaboration with the foundation’s board of directors. 

Among the foundation’s achievements is the funding of a pioneering CAR-T therapy for rhabdomyosarcoma and a comparative oncology project studying naturally occurring cancers in dogs. These projects demonstrate the foundation’s commitment to transforming research into viable medical solutions. “Our mission transcends raising funds; it’s about reshaping the future of how we combat pediatric cancer,” Oscar shares, reflecting on the foundation’s achievements. The foundation positions itself not just as a financial supporter but as a critical partner in pediatric cancer research, providing the essential seed capital to drive innovative solutions. 

Community and Future Goals 

Now, as the sun just begins to crest the horizon, Oscar prepares for the foundation’s second largest fundraiser of the year, “Kayaking for Hope.” Alongside a group of dedicated paddlers, he is lined up along the sandy shores of Key Largo, ready to embark on a grueling 110-mile journey to Key West. This event not only tests their physical stamina but also symbolizes their relentless pursuit of a future where no parent has to tell their child that they’re out of treatment options. 

“This kayaking event, much like our journey through Sebastian’s treatment, is about pushing beyond the limits and fighting against a current that often seems too strong,” Oscar explains as he adjusts his life vest, his gaze fixed on the tranquil waters that will soon become their path of resilience. “It’s our way of channeling our grief into action, transforming our loss into a collective force for hope and change.” 

Meanwhile, Rose stands ready at the starting line, her role as part of the road crew being crucial for logistical support. “Every part of this effort is vital. We’re not just raising funds; we’re raising awareness and building a community that understands the urgency and the depth of the challenge we face in pediatric cancer research,” Rose states, as she coordinates supplies and strategies for meeting points along the route. 

As the first rays of light stretch across the water, Oscar and his team push off from the shore. The quiet splash of their paddles rhythmically breaking the surface carries with it the weight of their cause and the memory of Sebastian, and others lost too soon, propelling them forward into the day’s challenge. Rose and the rest of the road crew watch them depart, their presence a steady reminder of the support that binds the community together in their shared mission. 

Joining Forces for the Final Mile 

On the fifth day, the paddlers meet up with nine families that will join them for the final mile. Their hands are blistered, muscles aching, and sunburned spots reveal the toll of the journey. Despite the physical pain, it is all worth it to see the smiles on the kids’ faces as they prepare to paddle together. This final mile is a glimpse of hope—a shared moment that embodies the resilience and spirit of the journey, reminding everyone why they fight so hard against pediatric cancer. 

A Lasting Legacy

As the paddlers and children cross the finish line together, the cheers of the crowd blend with the waves, marking the end of another successful Kayaking for Hope event. The pain and exhaustion of the journey are momentarily forgotten, replaced by a shared sense of accomplishment and purpose. Families gather, new friendships having been formed on the shore, while children play, momentarily free from the weight of their conditions. 

Rose and Oscar mingle among the participants and supporters, their hearts full of both joy and sorrow. In this moment, the full impact of what the SebastianStrong Foundation has achieved becomes palpable—not just in dollars raised or research funded, but in the community of hope they’ve built, a testament to their son’s enduring spirit. 

Oscar takes a moment to reflect on the profound journey that began with unimaginable loss but led to such significant impact: “I am incredibly grateful for Sebastian being a part of my life. I am a better person for having known him and will continue to be because of what he’s taught me, the courage he showed through this battle, and the love with which he lived. His spirit will live in me forever.” 

As the sun sets over the horizon, casting long shadows and bathing the event in a warm glow, the community’s resolve to continue the fight against pediatric cancer is stronger than ever. Sebastian’s legacy is not marked by his death, but by the lives he continues to touch through the work of the SebastianStrong Foundation.