COCA STRONG: My Son’s Fight for Rare Disease Awareness

By Carlos Bernard, Sr.

In the span of just a few years, my son Carlos “Coca” has been forced to grow up faster than anyone ever should.

At 13, he was diagnosed with leukemia. And our world stopped. Our days became a blur of mostly hospital and prayers. There were many moments of fear I’ll never forget but Coca never let fear define him. Even in his weakest moments, his spirit remained strong. His resilience taught me things I didn’t know I needed to learn.

After two years of treatment, he was well on his way towards recovery. We thought we could breathe again. But in December 2023, life threw him another curve. Coca’s health began to decline in ways no one could explain. We were still under the care of Memorial Sloan Kettering, an extraordinary team that had walked us through leukemia. But even there, with all their expertise, the process of diagnosing aHUS was slow. It was just so rare and no one was looking for it at first. We watched, terrified, as Coca weakened while we waited for answers.

We eventually received the diagnosis. Another disease. Another life altering battle. Another moment of realizing how quickly everything can change in an instant.

And somehow, Coca kept going.

There are hard days. He continues to receive treatment. There are moments when the weight of thinking about how much your child has already endured feels unbearable. But every time we find ourselves at that edge, Coca surprises us again.

When he was first offered a wish through Make-A-Wish, we assumed it might be something like a trip. Possibly to a beach or just somewhere he could relax and escape everything he’d been through. But Coca, being Coca, didn’t ask for that.

He didn’t feel worthy.

Even after everything he had gone through, he questioned whether he deserved something just for himself. So he chose to defer the wish for a year, quietly carrying it with him while he thought about what would be meaningful.

And when he finally decided, he chose others.

He asked to organize a race.

Not for himself and not to raise money for his own treatment. He wanted to organize a race for aHUS and rare disease awareness. Because he knew, firsthand, how invisible these diseases can be. He knew how much they get overlooked. He knew there were other kids and other families, like ours, who needed to be seen.

So now, while still in treatment, our 16-year-old son is leading the charge on the Coca Strong 5K/10K, a race to raise awareness for people fighting rare diseases.

He’s worked on the sponsorship packets and flyers. He’s walked into restaurants and businesses to explain what aHUS is. He’s sent out countless emails and talked with news outlets because he genuinely wants others to have what he didn’t: a platform, a voice and support.

Coca is a force. His mother and I watch him navigate the world, still our baby, and we’re reminded of how lucky we are, even in the middle of something so difficult.

We couldn’t be prouder of who he is and what he’s seeking to build. The Coca Strong 5K/10K is more than a race. It’s a statement. It’s a fight to be seen and heard. It’s Coca’s way of saying, “We’re here and we matter.”

There’s still so much uncertainty around rare diseases like aHUS. So many people go undiagnosed or misdiagnosed. So much funding and research are still needed. But Coca’s determined to be part of changing that. And his heart and his drive are contagious.

He’s already done more with his 16 years than some do in a lifetime. And the best part is he’s just getting started.

If you’re reading this and you’re part of a rare disease family or if you love someone who is, know that Coca is running for you too.

Coca’s Dad