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…
A Mother's Dream to Rise Above – a Column by Cristina Vargas
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…
Being a teenager is a challenging phase of life with its own unique struggles and complexities. However, my daughter Faith’s battles go far beyond common adolescent concerns. Not only is Faith dealing with the stress and seclusion that often come with this period, but she’s also grappling with the immense…
As a parent who battled hard to get my son, Juju, diagnosed with late-infantile Batten disease (CLN2 disease), I’m familiar with advocacy. Our family’s journey has revealed the importance of spreading awareness about Batten disease and the urgent need to find a cure for all children affected…
Recent Posts
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- Rare disease awareness is about a brighter future for all of us
- Advocacy and communication were key to receiving quality care in a crisis
- Miglustat may slow physical decline in juvenile Batten disease: Study
- FDA clears late infantile Batten disease gene therapy for testing
- Giving thanks for every milestone as a CLN2 Batten disease parent
- Brain abnormalities can vary by age, sex in juvenile Batten
- How Batten disease parents can drive change through advocacy
- How we celebrate Halloween with medically complex children