A Mother's Dream to Rise Above — Cristina Vargas

Cristina Vargas has a strong educational foundation in paralegal studies and an outstanding record of writing as an advocate for rare diseases. Her professional background is focused on activism and legal work that have been boosted by her great writing techniques. At the age of five, her remarkable son Juju was diagnosed with CLN2 Batten disease. She is committed to making a difference in the lives of those impacted by rare diseases. She lives to motivate, uplift, and encourage others! Cristina genuinely enjoys writing and speaking out for causes.

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The part of rare disease care they don’t prepare you for

There is a moment that happens after every appointment, infusion, or procedure that people don’t see. From the outside, it may seem like the hardest part is over. The appointment may have gone well, or the treatment may be done. There may be a sense of relief, even if it’s…

Cristina Vargas

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A letter to Juju, my 7-year-old son with Batten disease

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…

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How a late-infantile Batten disease diagnosis led to advocacy

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.


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