Support Mares' Battle Against a One-in-a-Billion Disease

We are the Rincón Torres family, and in 2024, our world changed forever with the birth of our daughter, Mares Alhena. From the very first heartbeat, she was deeply loved and longed for. Her arrival filled our lives with joy, hope, and dreams for the future.

But just two days after she was born, everything changed.

Mares began having seizures. That terrifying moment marked the beginning of a journey no parent is ever prepared for—a journey filled with fear, pain, and endless questions. After countless medical tests, we were told Mares has a rare genetic mutation—one so uncommon, she is only the second known child in the world to have it.

This mutation in the LONP1 gene causes mitochondrial myopathy and epileptic encephalopathy. In simple terms, it means our daughter faces severe seizures, developmental delays, and a heartbreaking prognosis: a very short life expectancy.

We were told to prepare for the worst. But we chose to fight for her life instead.

With faith in God and love as our guide, we’ve taken Mares to every possible therapy. Slowly, she’s begun to defy the odds. She’s holding her head up. She’s turning. She’s smiling. She’s alive—and thriving in ways her doctors said she never would.

But we can’t do this alone.

Mares is now undergoing stem cell therapy, which has shown promise in similar conditions. We are also exploring experimental treatments that may give her a real chance. These treatments aren’t available in our country, and their cost is far beyond our reach as a family.

This is why we’re asking for your help.

To live with a child’s illness is to live between tears and determination. Every day, we wake up, cry if we must—and then we keep walking because Mares deserves everything we can give her. And because we believe her life is worth fighting for.

We ask for your support, whether by donating, sharing, or simply keeping her in your prayers. Every bit helps, and every gesture counts.

We promise to keep walking, loving, and fighting for our daughter. Because Mares isn’t just her name—it means “seas,” and she carries the strength of oceans in her tiny body.

From the depths of our hearts, thank you.

The Rincón Torres Family