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…
A Mother's Dream to Rise Above – a Column by Cristina Vargas
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
- CBD may delay seizures, shorten their duration in late infantile Batten
- Behind the Batten disease advocate is a grieving mother
- Research takes time that our children with Batten disease don’t have
- Batten disease study from Argentina shows regional data is key
- My son may be in heaven, but I will never stop being his mother
- A mother’s dream for her child with Batten disease, written across heaven
- Low quality of life found for children with juvenile Batten and their parents
- Gut bacteria changes likely side effect, not driver, of CLN2 disease
- A moment in the sun shines a light on more than just the hard parts
- The part of rare disease care they don’t prepare you for