A Mother's Dream to Rise Above — Cristina Vargas

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…

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…

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…

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…