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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. He’ll turn 8 years old on Dec. 19, and as I reflect on those years, I…
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 beautiful, even amidst the challenges we face. Our family, though small, is tightly knit, and this…
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 when Juju, my son, was diagnosed with late-infantile Batten disease (CLN2 disease), a rare and devastating…
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 unexpected challenges at us, much like the sudden craving for a sweet treat. Our smiles can…
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, navigating the fun house mirrors of parenting three children with significant health challenges adds an extra…
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 congenital heart defect called pulmonary atresia. Between this new role, more responsibilities at school, and…
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 toll can be overwhelming, I’ve learned the importance of not allowing those emotions to overshadow my…
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 disease. We also have a healthy teenage daughter. My vision is to create an ideal temporary…
Caring for my 7-year-old son, Juju, who has late-infantile Batten disease (CLN2 disease), is a journey filled with challenges and emotional ups and downs. As a mother, the responsibilities can sometimes feel overwhelming, but I constantly remind myself that I am more than just a caregiver. In this column,…
Summer is a time for fun and relaxation, and my family is determined to make the most of it, despite the challenges we face. We have two children with rare diseases: Juju, who has CLN2 disease (also known as late-infantile Batten disease), and Serenity, who has…
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