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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Behind the Batten disease advocate is a grieving mother

People often tell me how strong I am. They see the advocacy, the interviews, the meetings, and the columns I continue writing after my son Juju gained his wings in May. They see me speaking about his CLN2 disease, also known as late infantile Batten disease, with determination and…

Cristina Vargas

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Challenges children may face when growing up with a sick sibling

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…

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The importance of spreading awareness about Batten disease

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…

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How to have a strong marriage in a rare disease family

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…

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How stability helps parents of children with chronic illness

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…

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Advice to parents of children with late-infantile Batten disease

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…

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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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