Day 018/365



Last night, I was invited by my friend, William Mendez to watch his TEDx Talk. This was my first TED as live audience and it was a completely different experience, full of stories of pervasiveness, consistency and vision. And one story was perhaps the most beautiful story I have ever heard live.

This is the story of Raymond Rodriguez-Torres, a Cuban American father who meticulously planned every aspect of his life, from his career to marrying a specific woman on a particular date and having two beautiful daughters. Remarkably, he achieved all these goals. However, life took an unexpected turn during the delivery of their first child. Complications arose, extending the labor to a grueling 13 hours, leaving her with incomplete cognitive development and an inability to speak.

The dad, joined forces with his dad—a pediatrician— and his wife, a teacher specializing in special needs children. Together, they provided unwavering care for their daughter. Despite the challenges, they cherished this precious child, even when others mocked her inability to communicate. In restaurants, where she could only moan, neighboring tables sometimes cast judgment, questioning their parenting abilities. Yet, they held onto their jewel, fiercely protecting her.

When their daughter turned five, the father got a call that she is unable to walk. The diagnosis was devastating: their daughter had a rare autoimmune disease attacking her nervous system, causing paralysis that ascended toward her lungs. Thankfully, a five-dose medication halted the disease’s progression.

They rushed to start the medication, and it worked—stopping the progress of the disease. However in a couple of days they realized they faced a bigger issue: her abdominal muscles were also paralyzed, and she would never walk again.

They took her for the last test—an MRI of her vertebrae. The diagnosis was grim: a tumor on her back. An immediate operation was necessary. During the surgery, they discovered that she had cancer, with a survival time of only a few weeks to a few months.

He felt anger and frustration. Why him? Why her? She hadn’t done anything wrong, yet he knew he had to be strong. It was the only way to help her.
They reached out for help across their network—not for money, but for support. From food to hugs, everyone pitched in. People from over 100 countries contributed positive energy. She lived another 4 years, her final breath taken in the arms of love.

Tragedies wouldn’t define them; it was how they responded that truly mattered. They founded the Live Like Bella® Childhood Cancer Foundation supporting cancer research and helping families of children with cancer. Over the past decade, they’ve raised $36 million, with 100 percent of donations going to the cause in dozens of countries.

Bella’s loss was a tragedy, but she was an angel born into their family. Their inspiring response and profound story deserve to be shared. I can’t wait to see it on YouTube!