A Mother's Dream to Rise Above — Cristina Vargas

I don’t recall the exact moment I sensed something was different about my son, Juju, but a mother’s intuition often whispers truths before they become evident. Before doctors ever uttered the words “CLN2 disease”…

This time of year holds a special place in my heart and fills me with gratitude, determination, and a deep sense of purpose. Rare Disease Awareness Month, observed every February, isn’t just a time…

As the new year dawns, I find myself reflecting on the hopes and dreams I hold for my child, who is bravely navigating the challenges of CLN2 disease, also known as late-infantile Batten…

As the mother of Juju, a brave boy who was diagnosed with late-infantile Batten disease (also known as CLN2 disease) in 2021, I’ve witnessed an incredible journey filled with challenges, resilience, and hope.

As Thanksgiving approaches, the air is filled with a sense of warmth and an invitation to reflect. This time of year invites us to pause and appreciate the little things that make life…

My story begins with my most precious gift: my son. Like any mother, I dreamed that his future would be filled with laughter, adventures, and boundless possibilities. However, our reality took a sharp turn…

How can someone maintain a clear vision of their goals when navigating a whirlwind of emotions and striving to be the best mother, wife, and person possible? Life has a unique way of throwing…

In the whirlwind of daily life, carving out time for ourselves can feel almost as challenging as seeking a mythical unicorn; it’s like an elusive figment of our imagination. For my husband and me,…

My precious son, Juju, took a significant step in his life recently when he started second grade. Earlier this year, Juju became an older brother when my daughter, Serenity, was born with a…

As the mother of a child with late-infantile Batten disease (CLN2 disease), I find myself on a journey that is both heart-wrenching and illuminating. Each day presents unique challenges, and while the emotional…

My husband and I are parents to two children with rare diseases: CLN2 disease, also known as late-infantile Batten disease, and pulmonary atresia with intact ventricular septum (PA/IVS), a rare, congenital heart…