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…
A Mother's Dream to Rise Above – a Column by Cristina Vargas
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…
In today’s fast-paced world, maintaining a strong and healthy marriage can be challenging. It’s even more difficult when the complexities of raising children with medical conditions are added to the mix. Our daughter, Serenity, battles a heart defect known as pulmonary atresia, and our son, Juju, has…
Raising two children with rare health conditions has presented me with a multitude of obstacles to overcome. Juju, my 7-year-old son, battles Batten disease (specifically, CLN2 disease), while my 1-month-old daughter, Serenity, has pulmonary atresia, a congenital heart defect. By sharing my experiences, I hope to bring attention…
As a parent of a child with late-infantile Batten (CLN2) disease, I’ve found it’s important to prioritize not only their physical care, but also their mental well-being. Coping with the challenges of this rare genetic disorder can be overwhelming, but several tips and strategies can help create space…
My dear Juju, Just as a butterfly is inspired by the beauty of a flower, I am inspired by you, my son. Your strength and resilience, despite the challenges you face from late-infantile Batten disease (CLN2 disease), have transformed my perspective on life. Like a butterfly emerging from…
Have you ever had the perplexing experience of opening a book and seeing it blank? The pages should include some relevant material, but all that’s present is emptiness. I experienced that sense of bewilderment and ambiguity when at last I realized the truth about what my son, Juju, was facing.
Recent Posts
- Acknowledging the invisible cost of being a caregiver for Batten disease
- Many juvenile Batten disease patients face mental health issues: Study
- Our Batten disease journey carries on quietly, but with determination
- For our rare disease family, February is about love, advocacy, and unity
- Study maps juvenile Batten disease timeline, aiding care planning
- 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