A Story of Strength and Hope

Dear friends, professionals, and community,

I would like to share a very special moment from our journey with my daughter, Lauren Rosa, diagnosed with the rare syndrome KCNT1.

This image is more than a photograph. It is a milestone. A silent miracle. One of the first records of Lauren Rosa sleeping peacefully a light, serene sleep that transcends pain and reveals the strength that lives within her small body.

After three months of uninterrupted seizures, sleepless nights, and daily battles, this moment represents small victories, resilience, and hope. The moment I took this photo, her peaceful little face wasn’t just resting it was radiating silence and relief. As if saying, without words: “I am here. I endure.”

This moment is a testimony of overcoming, of the fight of a child with a rare syndrome, of the love that sustains her, and of the certainty that it is worth fighting. It is worth not giving up on our children.

"If we have unity, we have information. If we have information, we have strength. If we have strength, we have hope. And if we have hope, we have the path. We will keep fighting with dedication and love."

"Lauren Rosa smiling is one of the most satisfying moments of our lives. Her bright eyes, tenderness, and happiness are clear. And yes, they feel, they love, and they know that a hug is comforting. They know we are there taking care of them. They know they are safe. This is her message to the whole world."

About the Treatment and Our Gratitude

As we move forward, we strive to offer Lauren the best possible quality of life. We know that not all diagnosed with KCNT1 respond to treatments with CBD, Ketogenic Diet, and Quinidine, but for Lauren, these combinations have brought positive responses, under the attentive and caring eyes of the doctors walking this journey with us.

Our eternal gratitude to Dr. Rubens Wajnsztejn, the neurologist who cares for Lauren, and to the multidisciplinary team at FMABC – Faculdade de Medicina do ABC, São Paulo, Brazil, who welcomed us with humanity and competence. They embraced Lauren as if she were their own and continue by our side, even in the most difficult moments.

Lauren is living proof that life is greater than the KCNT1 diagnosis.  She is light. She is fight. She is a Rosa. She is pure love.

With all my love and affection, Gerard Souza Batista Daddy loves you with all his heart!